Required metadata needed for the GWDM
+Associated identifier (number) that is the BigInt key in our SQL database for the dataset version associated with this metadata
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Gateway Identifier | ++ | False | +True | +['str'] | +
A unique persistent identifier for the metadata version. This is a 128-bit unique identifiers, as 32 hexadecimal digits separated by hyphens
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Gateway Persistent Identifier | ++ | False | +True | +['str'] | +
Datetime stamp of when this metadata version was initially issued
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Metadata Issued Datetime', | ++ | False | +True | +['datetime'] | +
Datetime stamp of when this metadata was last modified
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Last Modified Datetime | ++ | False | +True | +['datetime'] | +
A list of persistent identifiers and version numbers for previous versions of metadata for this dataset
+Version number used for previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision version | ++ | False | +True | +['str'] | +
Examples:
+Some url with a reference to the record of a previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision url | ++ | False | +True | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]"] | +
Examples:
+Summary of metadata describing key pieces of information.
+Title of the dataset limited to 150 characters. It should provide a short description of the dataset and be unique across the gateway. If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. Good titles should summarise the content of the dataset and if relevant, the region the dataset covers.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Title | +- The title should provide a short description of the dataset and be unique across the gateway. - If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. - If an accronym is widely used the dataset name, please add it in brackets () at the end of the title. - Good titles should summarise the content of the dataset and if relevant, the region the dataset covers. - Example: North West London COVID-19 Patient Level Situation Report |
+False | +True | +["TwoHundredFiftyFiveCharacters[{'maxLength': 255, 'minLength': 2, 'type': 'string'}]"] | +
Examples:
+A shorter descriptive title of the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Short Title | ++ | False | +True | +["ShortTitle[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+DOI associated to this dataset. Find out more about DOIs here: https://www.doi.org/the-identifier/what-is-a-doi/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Digital Object Identifier (DOI) for dataset | +- Please note: This is not the DOI of the publication(s) associated with the dataset. - All HDR UK registered datasets should either have a (DOI) or be working towards obtaining one. - If a DOI is available, please provide the DOI. - What happens if I do not have a DOI?: Contact your academic organisation to find out if there is an existing relationship with a DOI provider. If that is not available, sites such as figshare offer free services to mint a DOI for your dataset. Subsequent versions of the Metadata Exchange will provide a DOI minting service. |
+False | +True | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. The optimal length is one paragraph (limited to 255 characters) and effective abstracts should avoid long sentences and abbreviations where possible.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset abstract | +- The abstract should provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. - The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. - Effective abstracts should avoid long sentences and abbreviations where possible. - Note: Researchers will view Titles and the first line of Abstracts (list view) when searching for datasets and choosing whether to explore their content further. - Abstracts should be different from the full description for a dataset. - Example: CPRD Aurum contains primary care data contributed by General Practitioner (GP) practices using EMIS Web® including patient registration information and all care events that GPs have chosen to record as part of their usual medical practice. |
+False | +True | +["LongAbstractText[{'anyOf': [{'maxLength': 5000, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]"] | +
Examples:
+Please provide a list of relevant and specific keywords that can improve the search engine optimisation (SEO) of your dataset as a comma separated list. Notes: Onboarding portal will suggest keywords based on title, abstract and description. We are compiling a standardised list of keywords and synonyms across datasets to make filtering easier for users.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Keywords | +- Please provide relevant and specific keywords that can improve the search engine optimization of your dataset. - Please enter one keyword at a time and click Add New Field to add further keywords. - Text from the title is automatically included in the search, there is no need to include this in the keywords. - Include words that researcher may include in their searches. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Keywords that have been filtered and limited
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Controlled Keywords | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a valid email address that can be used to coordinate data access requests.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Contact point | +Organisations are expected to provide a dedicated email address associated with the data access request process. If no contact point is provided in this field, this field will be defaulted to the teams support email provided in the teams setting. Note: An employee's email address can only be provided on a temporary basis and if one is provided, you must obtain explicit consent for this purpose. |
+False | +True | +['EmailStr', 'null'] | +
Examples:
+Placeholder for dataset type"
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Type | ++ | False | +True | +["DatasetType[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Longer description of the dataset in detail
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Description | ++ | False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+This is the organisation responsible for running or supporting the data access request process, as well as publishing and maintaining the metadata. In most this will be the same as the HDR UK Organisation (Hub or Alliance Member). However, in some cases this will be different i.e. Tissue Directory are an HDR UK Gateway organisation but coordinate activities across a number of data publishers i.e. Cambridge Blood and Stem Cell Biobank.
+The organisation responsible for running or supporting the data access request process, as well as publishing and maintaining the metadata. In most this will be the same as the HDR UK Organisation (Hub or Alliance Member)/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Publisher name | ++ | False | +True | +['Name[{}]', 'null'] | +
Examples:
+The link to an ID somewhere in the gateway where more information on the publisher can be retrieved."
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Publisher gateway id | ++ | False | +False | +['str', 'null'] | +
This information includes attributes for geographical and temporal coverage, cohort details etc. to enable a deeper understanding of the dataset content so that researchers can make decisions about the relevance of the underlying data.
+The geographical area covered by the dataset. It is recommended that links are to entries in one of the recommended standards:
- For locations in the UK: ONS standards
- For locations in other countries: ISO 3166-1 & ISO 3166-2
| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Geographic coverage | +- The geographical area covered by the dataset. - Please provide a valid location. - For locations in the UK, this location should conform to ONS standards. - For locations in other countries we use ISO 3166-1 & ISO 3166-2. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Availability of physical samples associated with the dataset. If samples are available, please indicate the types of samples that are available. More than one type may be provided. If sample are not yet available, please provide “AVAILABILITY TO BE CONFIRMED”. If samples are not available, then please provide “NOT AVAILABLE”.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Physical Sample Availability | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Patient pathway description | +- Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. - This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway. |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
If known, what is the typical time span that a patient appears in the dataset (follow up period). In a prospective cohort study, after baseline information is collected, participants are followed “longitudinally” i.e. new information is collected about them for a period of time afterward. This is known as the “follow up period”. What is the typical time span of follow up, e.g. 1 year, 5 years? If there are multiple cohorts in the dataset with varying follow up periods, please provide the longest follow up period.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Follow-up | +If known, please indicate the typical time span that a patient appears in the dataset (follow up period). -0 - 6 MONTHS: Data typically available for a patient over a 0-6 month period. -6 - 12 MONTHS: Data typically available for a patient over a 6-12 month period. -1 - 10 YEARS: Data typically available for a patient over a 1-10 year period. -> 10 YEARS: Data typically available for a patient for over a 10 year period. -CONTINUOUS: Data for patients is being regularly added to and updated. -UNKNOWN: Timespan is Unknown. -OTHER: Data available for a patient over another time period. |
+False | +False | +["Followup['0 - 6 MONTHS','6 - 12 MONTHS','1 - 10 YEARS','> 10 YEARS','UNKNOWN','CONTINUOUS','OTHER',null]", 'null'] | +
Please indicate the age range in whole years of participants in the dataset. Please provide range in the following format '[min age] – [max age]' where both the minimum and maximum are whole numbers (integers).
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Age Range | ++ | False | +False | +["AgeRange[{'anyOf': [{'pattern': 'Not Known | +
Examples:
+Provenance information allows researchers to understand data within the context of its origins and can be an indicator of quality, authenticity and timeliness.
+None
+Please indicate the purpose(s) that the dataset was collected.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Purpose of dataset collection | +- Research cohort: Data collected for a defined group of people. - Study: Data collected for a specific research study. - Disease registry: Data collected as part of a disease registry. - Trial: Data collected for as part of a clinical trial. - Care: Data collected as part of routine clinical care. - Audit: Data collected as part of an audit programme. - Administrative: Data collected for administrative and management information purposes. - Financial: Data collected either for payments or for billing. - Statutory: Data collected in compliance with statutory requirements. - Other: Data collected for other purpose. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please indicate the source of the data extraction.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Source of data extraction | +- EPR: Data Extracted from Electronic Patient Record. - Electronic survey: Data has been extracted from electronic surveys. - LIMS: Data has been extracted from a laboratory information management system. - Paper-based: Data has been extracted from paper forms. - Free text NLP: Data has been extracted from unstructured freetext using natural language processing. - Machine generated: Data has been machine generated i.e. imaging. - Other: Data has been extracted by other means. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please indicate the setting(s) where data was collected. Multiple settings may be provided
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection Situation Setting | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
None
+The start of the time period that the dataset provides coverage for. If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Start date | +- The start of the time period that the dataset provides coverage for. - If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information. |
+False | +True | +['date', 'datetime', 'null'] | +
The end of the time period that the dataset provides coverage for. If the dataset is “Continuous” and has no known end date, please state continuous. If there are multiple cohorts in the dataset with varying end dates, please provide the latest date and use the description or the media attribute to provide more information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| End date | +- The end of the time period that the dataset provides coverage for. - If the dataset is “Continuous” and has no known end date, please leave blank. - If there are multiple cohorts in the dataset with varying end dates, please provide the latest date. |
+False | +False | +['date', 'datetime', 'null'] | +
Please indicate the typical time-lag between an event and the data for that event appearing in the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Time lag | +Please indicate the typical time-lag between an event and the data for that event appearing in the dataset. - Less than 1 week: Typical time lag of less than a week. - 1-2 weeks: Typical time-lag of one to two weeks. - 2-4 weeks: Typical time-lag of two to four weeks. - 1-2 months: Typical time-lag of one to two months. - 2-6 months: Typical time-lag of two to six months. - 6 months plus: Typical time-lag of more than six months. - Variable: Variable time-lag. - Not applicable: Not Applicable i.e. static dataset. - Other: Other time-lag. |
+False | +True | +["TimeLag['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NO TIMELAG','NOT APPLICABLE','OTHER',null]"] | +
Please indicate the frequency of distribution release. If a dataset is distributed regularly please choose a distribution release periodicity from the constrained list and indicate the next release date. When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. If a dataset has been published and will remain static please indicate that it is static and indicated when it was released. If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Periodicity | ++ | False | +True | +["Periodicity['STATIC','IRREGULAR','CONTINUOUS','BIENNIAL','ANNUAL','BIANNUAL','QUARTERLY','BIMONTHLY','MONTHLY','BIWEEKLY','WEEKLY','SEMIWEEKLY','DAILY','OTHER',null]"] | +
Date of the latest release of the dataset. If this is a regular release i.e. quarterly, or this is a static dataset please complete this alongside Periodicity. If this is Irregular or Continuously released please leave this blank. Notes: Periodicity and release date will be used to determine when the next release is expected. E.g. if the release date is documented as 01/01/2020 and it is now 20/04/2020 and there is a quarterly release schedule, the latest release will be calculated as 01/04/2020.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Distribution release date | +- Please indicate the frequency the dataset is published. - If a dataset is published regularly please choose a publishing periodicity from the constrained list and indicate the next release date. - When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. - If a dataset has been published and will remain static please indicate that it is static and indicate when it was released. - If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. - If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. - Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/ |
+False | +False | +['date', 'datetime', 'null'] | +
Accessibility information allows researchers to understand access, usage, limitations, formats, standards and linkage or interoperability with toolsets.
+This section includes information about how the data can be used and how it is currently being used.
+Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. NOTE: we have extended the Data Use Ontology to include a value for NO LINKAGE.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data use limitation | +Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. - General research use: This data use limitation indicates that use is allowed for general research use for any research purpose. - Genetic studies only: This data use limitation indicates that use is limited to genetic studies only (i.e., no phenotype-only research). - No general methods research: This data use limitation indicates that use includes methods development research(e.g., development of software or algorithms) only within the bounds of other use limitations. - No restriction: This data use limitation indicates there is no restriction on use. - Research-specific restrictions: This data use limitation indicates that use is limited to studies of a certain research type. - Research use only: This data use limitation indicates that use is limited to research purposes (e.g., does not include its use in clinical care). - No linkage: This data use limitation indicates there is a restriction on linking to any other datasets |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please indicate fit here are any additional conditions set for use if any, multiple requirements may be provided. Please ensure that these restrictions are documented in access rights information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data use requirements | +- Please indicate if there are any additional conditions set for use if any, multiple requirements may be provided. - Please ensure that these restrictions are documented in access rights information. - Collaboration required: This requirement indicates that the requestor must either agree to join a research consortium or collaborate with the primary study investigator(s). - Ethics approval required: This requirement indicates that the requestor must provide documentation of local institutional review board (IRB)/ ethics review board (ERB) approval. - Geographical restrictions: This requirement indicates that use is limited to within a specific geographic region. - Institution-specific restrictions: This requirement indicates that use is limited to use within an approved institution. - Not for profit use: This requirement indicates that use of the data is limited to not-for-profit organizations and not-for-profit use, non-commercial use. - Project-specific restrictions: This requirement indicates that use is limited to use within an approved project. - Publication moratorium: This requirement indicates that requestor agrees not to publish results of studies until a specific date. - Publication required: This requirement indicates that requestor agrees to make results of studies using the data available to the larger scientific community. - Return to database or resource: This requirement indicates that the requestor must return derived/enriched data to the database/resource. - Time limit on use: This requirement indicates that use is approved for a specific number of months. - User-specific restriction: This requirement indicates that use is limited to use by approved users. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide the text that you would like included as part of any citation that credits this dataset. This is typically just the name of the publisher. No employee details should be provided.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Citation requirements | +- Please provide the text that you would like included as part of any citation that credits this dataset. - This is typically just the name of the publisher. No employee details should be provided. - To add multiple entries, please click on '+' symbol to enter each separate website. - Example: National Services Scotland |
+False | +False | +["ShortDescription[{'anyOf': [{'maxLength': 1000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+This section includes information about data access.
+Please provide details for the data access rights.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access rights | +- The URL of a webpage where the data access request process and/or guidance is provided. If there is more than one access process i.e. industry vs academic please provide both separated by a comma. - If such a resource or the underlying process doesn’t exist, please provide “In Progress”, until both the process and the documentation are ready. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a brief description of the data access services that are available including: environment that is currently available to researchers; additional consultancy and services; any indication of costs associated. If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access service description | +Please provide a brief description of the data access services that are available including: - environment that is currently available to researchers - additional consultancy and services - any indication of costs associated If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers. Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset. |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide link(s) to a webpage or description detailing the service or cost model for processing data access requests.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access request cost | +This information should cover the costs and/or services available to different audiences (i.e. academic, commercial, non-UK, etc.). This can be in the form of text or a URL. | +False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide an indication of the typical processing times based on the types of requests typically received.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Time to dataset access | +- Less than 1 week: Access request process typically processed in less than a week. - 1-2 weeks: Access request process typically processed in one to two weeks. - 2-4 weeks: Access request process typically processed in two to four weeks. - 1-2 months: Access request process typically processed in one to two months. - 2-6 months: Access request process typically processed in two to six months. - More than 6 months: Access request process typically processed in more than six months. - Variable: Access request lead time is variable. - Not applicable: Access request process duration is not applicable. - Other: If the typical timeframe does not fit into the broad ranges i.e. lightweight application vs linked data application, please choose “Other” and indicate the typical timeframe within the description for the dataset. |
+False | +False | +["DeliveryLeadTime['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NOT APPLICABLE','OTHER',null]", 'null'] | +
Please use country code from ISO 3166-1 country codes and the associated ISO 3166-2 for regions, cities, states etc. for the country/state under whose laws the data subjects' data is collected, processed and stored.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Jurisdiction | +A full list of country codes can be found here (alpha-2 column): https://www.iso.org/obp/ui/#search/code/ | +False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Controller | +- Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed. - Notes: For most organisations this will be the same as the Data Custodian of the dataset. If this is not the case, please indicate that there is a different controller. - If there is a different controller please complete the Data Processor attribute to indicate if the Data Custodian is a Processor rather than the Data Controller. - In some cases, there may be multiple Data Controllers i.e. GP data. If this is the case, please indicate the fact in a free-text field and describe the data sharing arrangement or a link to it, so that this can be understood by research users. - Example: NHS England' |
+False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Processor | +A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller. - Notes: Required to complete if the Data Custodian is the Data Processor rather than the Data Controller. - If the Publisher is also the Data Controller please provide “Not Applicable”. - Examples: Not Applicable, SAIL |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Section includes technical attributes for language vocabularies, sizes etc. and gives researchers facts about and processing the underlying data in the dataset.
+Code value of the ontology vocabulary encoding
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Controlled Vocabulary | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+What the vocabulary conforms to.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Conforms To | +- List standardised data models that the dataset has been stored in or transformed to, such as OMOP or FHIR. - If the data is only available in a local format, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition. - HL7 FHIR: https://www.hl7.org/fhir/. - HL7 V2: https://www.hl7.org/implement/standards/product_section.cfm?section=13. - HL7 CDA: https://www.hl7.org/implement/standards/product_section.cfm?section=10. - HL7 CCOW: https://www.hl7.org/implement/standards/product_section.cfm?section=16. - DICOM: https://www.dicomstandard.org/. - I2B2: https://www.i2b2.org/. - IHE: https://www.ihe.net/resources/profiles/. - OMOP: https://www.ohdsi.org/data-standardization/the-common-data-model/. - openEHR: https://www.openehr.org/. - Sentinel: https://www.sentinelinitiative.org/sentinel/data/distributed-database-common-data-model. - PCORnet: https://pcornet.org/data-driven-common-model/. - CDISC: https://www.cdisc.org/standards/data-exchange/odm. - Local: In-house developed data model. - Other: Other standardised data model. - NHS Data Dictionary: https://www.datadictionary.nhs.uk/. - NHS Scotland Data Dictionary: https://www.ndc.scot.nhs.uk/Data-Dictionary/. - NHS Wales Data Dictionary: https://www.datadictionary.wales.nhs.uk/. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Language code(s) of the language of the dataset metadata and underlying data is made available.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Language Code(s) | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Format(s) the dataset can be made available in
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Format | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Metadata for various linkages with datasets and other gateway entities
+??
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is Generated Using | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Any media associated with the Gateway Organisation using a valid URI for the content. This is an opportunity to provide additional context that could be useful for researchers wanting to understand more about the dataset and its relevance to their research question
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Associated Media | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+??
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Uses | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The keystone paper associated with the dataset. Also include a list of known citations, if available and should be links to existing resources where the dataset has been used or referenced.',
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is Reference in | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
URL of any analysis tools or models that have been created for this dataset and are available for further use
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Tools | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Dataset Linkage copied over from
+Indicate if derived datasets or predefined extracts are available and the type of derivation available. Notes. Single or multiple dimensions can be provided as a derived extract alongside the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Derivations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+If the dataset is part of a group or family
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is PartOf | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Dataset is a member of XXX(?)
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is MemberOf | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Links to other datasets.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Linked Datasets | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide the keystone paper associated with the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Investigations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+This section provides an overview of observations of your dataset linked to specific points in time. Multiple observations about the dataset are encouraged to be provided, including multiple observations of the same property at different timepoints. At least one observation is required.
+Please select one of the following broad notes for your measured observation. Indicating whether the measured property is a recording of unique persons, events, findings or scans per modality.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset volume measure | +- Persons: Unique persons recorded in the dataset - Events: Unique events such as procedures and prescriptions within the dataset -Findings: Unique findings included in the dataset such as diagnoses' -Number of scans per modality: Unique scans for a specified imaging method modality (e.g. 12 x-rays) |
+False | +True | +["StatisticalPopulationConstrained['PERSONS','EVENTS','FINDINGS']"] | +
Examples:
+An integer value size of the measured property, such as ‘1000’ for 1000 people in the study or ‘87’ for 87 MRI scans in the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured value | +An integer value size of the measured property, such as ‘1000’ for 1000 people in the study or ‘87’ for 87 MRI scans in the dataset. | +False | +True | +['int'] | +
If required, please provide additional details that help distinguish between similar measured properties within your dataset, for example this is useful when SNOMED CT terms do not provide sufficient detail to distinguish between parts of the dataset population. Limited to 500 characters.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Disambiguating description | +If required please provide additional details that help distinguish between similar measured properties within your dataset, for example this is useful when SNOMED CT terms do not provide sufficient detail to distinguish between parts of the dataset population. | +False | +False | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Provide the date, or datetime that the observation was made. Multiple observations of the same property can be provided, for example an observation of cumulative COVID positive cases by specimen on the 1/1/2021 with a measuredValue of 2000000, and a second observation entry on 8/2/2021 recording a measuredValue of as 3100000.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Observation date | +Provide the date, or datetime that the observation was made. Multiple observations of the same property can be provided, for example an observation of cumulative COVID positive cases by specimen on the 1/1/2021 with a measuredValue of 2000000, and a second observation entry on 8/2/2021 recording a measuredValue of as 3100000. | +False | +True | +['date', 'datetime'] | +
Descriptive term for the observation property measured. For example, people, procedures, x-rays, or diagnosis of type 1 diabetes. This could also be a specific SNOMED CT term.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured property | +Descriptive term for the observation property measured. | +False | +True | +['MeasuredProperty[{}]'] | +
Descriptions of all tables and data elements that can be included in the dataset
+The name of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Name | ++ | False | +True | +['str', 'null'] | +
A description of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Description' | ++ | False | +False | +['str', 'null'] | +
A list of columns contained within a table in a dataset.
+The name of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Name | ++ | False | +True | +['Name[{}]'] | +
The name of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Name | ++ | False | +True | +['str'] | +
A description of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Description | ++ | False | +False | +['str', 'null'] | +
A True or False value, indicating if the field is sensitive or not
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sensitive | ++ | False | +True | +['bool'] | +
values in a dataset
+Unique value in a column .
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value Name | ++ | False | +True | +['Name[{}]'] | +
A description of a unique value in a column.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value Description | ++ | False | +False | +['str', 'null'] | +
The frequency of occurrance of a value in a column
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value Frequency | ++ | False | +False | +['int', 'null'] | +
summary.version : new string field to record the metadata version, this was accidentaly dropped in the previous version of the modelsummary.populationSize: new integer field to record the population size of the dataset/cohort in the summary fieldsummary.datasetSubType: new string field to be used with summary.datasetType to record the type of datasetsummary.publisher : this field is now of type Organisation, it addssummary.publisher.publisherName --> summary.publisher.namesummary.publisher.publisherGatewayId --> summary.publisher.gatewayIdsummary.publisher.rorId (Optional) ror.orgcoverage.physicalSampleAvailability --> coverage.biologicalsamplescoverage.gendercoverage.psychologicalcoverage.physicalcoverage.anthropometriccoverage.lifestylecoverage.socioeconomictissuesSampleCollection.idtissuesSampleCollection.dataCategoriestissuesSampleCollection.materialTypetissuesSampleCollection.accessConditionstissuesSampleCollection.collectionTypetissuesSampleCollection.diseasetissuesSampleCollection.storageTemperaturetissuesSampleCollection.sampleAgeRangetissuesSampleCollection.tissueSampleMetadata.idtissuesSampleCollection.tissueSampleMetadata.sampleDonor.idtissuesSampleCollection.tissueSampleMetadata.sampleDonor.sextissuesSampleCollection.tissueSampleMetadata.sampleDonor.birthDatetissuesSampleCollection.tissueSampleMetadata.sampleDonor.dataCategoriestissuesSampleCollection.tissueSampleMetadata.sampleTypetissuesSampleCollection.tissueSampleMetadata.storageTemperaturetissuesSampleCollection.tissueSampleMetadata.creationDatetissuesSampleCollection.tissueSampleMetadata.anatomicalSiteOntologyCodetissuesSampleCollection.tissueSampleMetadata.anatomicalSiteOntologyDescriptiontissuesSampleCollection.tissueSampleMetadata.anatomicalSiteFreeTexttissuesSampleCollection.tissueSampleMetadata.sampleContentDiagnosistissuesSampleCollection.tissueSampleMetadata.useRestrictionsRequired metadata needed for the GWDM
+Associated identifier (number) that is the BigInt key in our SQL database for the dataset version associated with this metadata
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Gateway Identifier | ++ | False | +True | +['str'] | +
A unique persistent identifier for the metadata version. This is a 128-bit unique identifiers, as 32 hexadecimal digits separated by hyphens
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Gateway Persistent Identifier | ++ | False | +True | +['str'] | +
Datetime stamp of when this metadata version was initially issued
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Metadata Issued Datetime', | ++ | False | +True | +['datetime'] | +
Datetime stamp of when this metadata was last modified
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Last Modified Datetime | ++ | False | +True | +['datetime'] | +
A list of persistent identifiers and version numbers for previous versions of metadata for this dataset
+Version number used for previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision version | ++ | False | +True | +['str'] | +
Examples:
+Some url with a reference to the record of a previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision url | ++ | False | +True | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]"] | +
Examples:
+Dataset metadata version
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Version | ++ | False | +True | +['str'] | +
Examples:
+Summary of metadata describing key pieces of information.
+Title of the dataset limited to 150 characters. It should provide a short description of the dataset and be unique across the gateway. If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. Good titles should summarise the content of the dataset and if relevant, the region the dataset covers.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Title | +- The title should provide a short description of the dataset and be unique across the gateway. - If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. - If an accronym is widely used the dataset name, please add it in brackets () at the end of the title. - Good titles should summarise the content of the dataset and if relevant, the region the dataset covers. - Example: North West London COVID-19 Patient Level Situation Report |
+False | +True | +["TwoHundredFiftyFiveCharacters[{'maxLength': 255, 'minLength': 2, 'type': 'string'}]"] | +
Examples:
+A shorter descriptive title of the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Short Title | ++ | False | +True | +["ShortTitle[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+DOI associated to this dataset. Find out more about DOIs here: https://www.doi.org/the-identifier/what-is-a-doi/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Digital Object Identifier (DOI) for dataset | +- Please note: This is not the DOI of the publication(s) associated with the dataset. - All HDR UK registered datasets should either have a (DOI) or be working towards obtaining one. - If a DOI is available, please provide the DOI. - What happens if I do not have a DOI?: Contact your academic organisation to find out if there is an existing relationship with a DOI provider. If that is not available, sites such as figshare offer free services to mint a DOI for your dataset. Subsequent versions of the Metadata Exchange will provide a DOI minting service. |
+False | +True | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. The optimal length is one paragraph (limited to 255 characters) and effective abstracts should avoid long sentences and abbreviations where possible.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset abstract | +- The abstract should provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. - The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. - Effective abstracts should avoid long sentences and abbreviations where possible. - Note: Researchers will view Titles and the first line of Abstracts (list view) when searching for datasets and choosing whether to explore their content further. - Abstracts should be different from the full description for a dataset. - Example: CPRD Aurum contains primary care data contributed by General Practitioner (GP) practices using EMIS Web® including patient registration information and all care events that GPs have chosen to record as part of their usual medical practice. |
+False | +True | +["LongAbstractText[{'anyOf': [{'maxLength': 5000, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]"] | +
Examples:
+Please provide a list of relevant and specific keywords that can improve the search engine optimisation (SEO) of your dataset as a comma separated list. Notes: Onboarding portal will suggest keywords based on title, abstract and description. We are compiling a standardised list of keywords and synonyms across datasets to make filtering easier for users.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Keywords | +- Please provide relevant and specific keywords that can improve the search engine optimization of your dataset. - Please enter one keyword at a time and click Add New Field to add further keywords. - Text from the title is automatically included in the search, there is no need to include this in the keywords. - Include words that researcher may include in their searches. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Keywords that have been filtered and limited
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Controlled Keywords | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a valid email address that can be used to coordinate data access requests.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Contact point | +Organisations are expected to provide a dedicated email address associated with the data access request process. If no contact point is provided in this field, this field will be defaulted to the teams support email provided in the teams setting. Note: An employee's email address can only be provided on a temporary basis and if one is provided, you must obtain explicit consent for this purpose. |
+False | +True | +['EmailStr', 'null'] | +
Examples:
+Placeholder for dataset type"
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Type | ++ | False | +True | +["DatasetType[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Longer description of the dataset in detail
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Description | ++ | False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+This is the organisation responsible for running or supporting the data access request process, as well as publishing and maintaining the metadata. In most this will be the same as the HDR UK Organisation (Hub or Alliance Member). However, in some cases this will be different i.e. Tissue Directory are an HDR UK Gateway organisation but coordinate activities across a number of data publishers i.e. Cambridge Blood and Stem Cell Biobank.
+Name of the organisation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Name | ++ | False | +True | +['Name[{}]', 'null'] | +
Identifier on the gateway
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Gateway Identifier | ++ | False | +False | +['str', 'null'] | +
The Research Organization Registry (ROR) for the organisation, if applicable
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Research Organization Registry Identifier | ++ | False | +False | +['str', 'null'] | +
Summary population size of the cohort
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Population size | +This number informs a filter for Researchers to differentiate dataset search results based on the number of people in the dataset, and does not pull from the Observations fields. The filter also allows for Researchers to search datasets which have no population size reported, but will not pull any population size captured in the Observations section. | +False | +False | +['int', 'null'] | +
Placeholder for dataset sub-type
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Sub-type | ++ | False | +False | +["DatasetType[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
This information includes attributes for geographical and temporal coverage, cohort details etc. to enable a deeper understanding of the dataset content so that researchers can make decisions about the relevance of the underlying data.
+The geographical area covered by the dataset. It is recommended that links are to entries in one of the recommended standards:
- For locations in the UK: ONS standards
- For locations in other countries: ISO 3166-1 & ISO 3166-2
| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Geographic coverage | +- The geographical area covered by the dataset. - Please provide a valid location. - For locations in the UK, this location should conform to ONS standards. - For locations in other countries we use ISO 3166-1 & ISO 3166-2. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Patient pathway description | +- Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. - This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway. |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
If known, what is the typical time span that a patient appears in the dataset (follow up period). In a prospective cohort study, after baseline information is collected, participants are followed “longitudinally” i.e. new information is collected about them for a period of time afterward. This is known as the “follow up period”. What is the typical time span of follow up, e.g. 1 year, 5 years? If there are multiple cohorts in the dataset with varying follow up periods, please provide the longest follow up period.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Follow-up | +If known, please indicate the typical time span that a patient appears in the dataset (follow up period). -0 - 6 MONTHS: Data typically available for a patient over a 0-6 month period. -6 - 12 MONTHS: Data typically available for a patient over a 6-12 month period. -1 - 10 YEARS: Data typically available for a patient over a 1-10 year period. -> 10 YEARS: Data typically available for a patient for over a 10 year period. -CONTINUOUS: Data for patients is being regularly added to and updated. -UNKNOWN: Timespan is Unknown. -OTHER: Data available for a patient over another time period. |
+False | +False | +["Followup['0 - 6 MONTHS','6 - 12 MONTHS','1 - 10 YEARS','> 10 YEARS','UNKNOWN','CONTINUOUS','OTHER',null]", 'null'] | +
Please indicate the age range in whole years of participants in the dataset. Please provide range in the following format '[min age] – [max age]' where both the minimum and maximum are whole numbers (integers).
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Age Range | ++ | False | +False | +["AgeRange[{'anyOf': [{'pattern': 'Not Known | +
Examples:
+Cohort description: Male, Female, Other
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Gender | +Options are limited to Male/Female/Other. | +False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Cohort description: Blood, Saliva, Urine, Other
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Biological Samples | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Cohort description: Mental health, Cognitive function
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Psychological | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Cohort description: Cardiovascular, Respiratory, Musculoskeletal, Hearing and Vision, Reproductive
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Physical | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Cohort description: Height, Weight, Waist circumference, Hip circumference, Blood pressure
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anthropometric | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Cohort lifestyle habits: Smoking, Physical activity, Dietary habits, Alcohol
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Lifestyle | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Cohort description: Occupation, Family circumstances, Housing, Education, Ethnic group, Marital status, Social support
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Socio-economic | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Provenance information allows researchers to understand data within the context of its origins and can be an indicator of quality, authenticity and timeliness.
+None
+Please indicate the purpose(s) that the dataset was collected.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Purpose of dataset collection | +- Research cohort: Data collected for a defined group of people. - Study: Data collected for a specific research study. - Disease registry: Data collected as part of a disease registry. - Trial: Data collected for as part of a clinical trial. - Care: Data collected as part of routine clinical care. - Audit: Data collected as part of an audit programme. - Administrative: Data collected for administrative and management information purposes. - Financial: Data collected either for payments or for billing. - Statutory: Data collected in compliance with statutory requirements. - Other: Data collected for other purpose. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please indicate the source of the data extraction.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Source of data extraction | +- EPR: Data Extracted from Electronic Patient Record. - Electronic survey: Data has been extracted from electronic surveys. - LIMS: Data has been extracted from a laboratory information management system. - Paper-based: Data has been extracted from paper forms. - Free text NLP: Data has been extracted from unstructured freetext using natural language processing. - Machine generated: Data has been machine generated i.e. imaging. - Other: Data has been extracted by other means. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please indicate the setting(s) where data was collected. Multiple settings may be provided
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection Situation Setting | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
None
+The start of the time period that the dataset provides coverage for. If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Start date | +- The start of the time period that the dataset provides coverage for. - If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information. |
+False | +True | +['date', 'datetime', 'null'] | +
The end of the time period that the dataset provides coverage for. If the dataset is “Continuous” and has no known end date, please state continuous. If there are multiple cohorts in the dataset with varying end dates, please provide the latest date and use the description or the media attribute to provide more information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| End date | +- The end of the time period that the dataset provides coverage for. - If the dataset is “Continuous” and has no known end date, please leave blank. - If there are multiple cohorts in the dataset with varying end dates, please provide the latest date. |
+False | +False | +['date', 'datetime', 'null'] | +
Please indicate the typical time-lag between an event and the data for that event appearing in the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Time lag | +Please indicate the typical time-lag between an event and the data for that event appearing in the dataset. - Less than 1 week: Typical time lag of less than a week. - 1-2 weeks: Typical time-lag of one to two weeks. - 2-4 weeks: Typical time-lag of two to four weeks. - 1-2 months: Typical time-lag of one to two months. - 2-6 months: Typical time-lag of two to six months. - 6 months plus: Typical time-lag of more than six months. - Variable: Variable time-lag. - Not applicable: Not Applicable i.e. static dataset. - Other: Other time-lag. |
+False | +True | +["TimeLag['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NO TIMELAG','NOT APPLICABLE','OTHER',null]"] | +
Please indicate the frequency of distribution release. If a dataset is distributed regularly please choose a distribution release periodicity from the constrained list and indicate the next release date. When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. If a dataset has been published and will remain static please indicate that it is static and indicated when it was released. If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Periodicity | ++ | False | +True | +["Periodicity['STATIC','IRREGULAR','CONTINUOUS','BIENNIAL','ANNUAL','BIANNUAL','QUARTERLY','BIMONTHLY','MONTHLY','BIWEEKLY','WEEKLY','SEMIWEEKLY','DAILY','OTHER',null]"] | +
Date of the latest release of the dataset. If this is a regular release i.e. quarterly, or this is a static dataset please complete this alongside Periodicity. If this is Irregular or Continuously released please leave this blank. Notes: Periodicity and release date will be used to determine when the next release is expected. E.g. if the release date is documented as 01/01/2020 and it is now 20/04/2020 and there is a quarterly release schedule, the latest release will be calculated as 01/04/2020.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Distribution release date | +- Please indicate the frequency the dataset is published. - If a dataset is published regularly please choose a publishing periodicity from the constrained list and indicate the next release date. - When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. - If a dataset has been published and will remain static please indicate that it is static and indicate when it was released. - If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. - If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. - Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/ |
+False | +False | +['date', 'datetime', 'null'] | +
Accessibility information allows researchers to understand access, usage, limitations, formats, standards and linkage or interoperability with toolsets.
+This section includes information about how the data can be used and how it is currently being used.
+Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. NOTE: we have extended the Data Use Ontology to include a value for NO LINKAGE.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data use limitation | +Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. - General research use: This data use limitation indicates that use is allowed for general research use for any research purpose. - Genetic studies only: This data use limitation indicates that use is limited to genetic studies only (i.e., no phenotype-only research). - No general methods research: This data use limitation indicates that use includes methods development research(e.g., development of software or algorithms) only within the bounds of other use limitations. - No restriction: This data use limitation indicates there is no restriction on use. - Research-specific restrictions: This data use limitation indicates that use is limited to studies of a certain research type. - Research use only: This data use limitation indicates that use is limited to research purposes (e.g., does not include its use in clinical care). - No linkage: This data use limitation indicates there is a restriction on linking to any other datasets |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please indicate fit here are any additional conditions set for use if any, multiple requirements may be provided. Please ensure that these restrictions are documented in access rights information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data use requirements | +- Please indicate if there are any additional conditions set for use if any, multiple requirements may be provided. - Please ensure that these restrictions are documented in access rights information. - Collaboration required: This requirement indicates that the requestor must either agree to join a research consortium or collaborate with the primary study investigator(s). - Ethics approval required: This requirement indicates that the requestor must provide documentation of local institutional review board (IRB)/ ethics review board (ERB) approval. - Geographical restrictions: This requirement indicates that use is limited to within a specific geographic region. - Institution-specific restrictions: This requirement indicates that use is limited to use within an approved institution. - Not for profit use: This requirement indicates that use of the data is limited to not-for-profit organizations and not-for-profit use, non-commercial use. - Project-specific restrictions: This requirement indicates that use is limited to use within an approved project. - Publication moratorium: This requirement indicates that requestor agrees not to publish results of studies until a specific date. - Publication required: This requirement indicates that requestor agrees to make results of studies using the data available to the larger scientific community. - Return to database or resource: This requirement indicates that the requestor must return derived/enriched data to the database/resource. - Time limit on use: This requirement indicates that use is approved for a specific number of months. - User-specific restriction: This requirement indicates that use is limited to use by approved users. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide the text that you would like included as part of any citation that credits this dataset. This is typically just the name of the publisher. No employee details should be provided.
+Examples:
+Name of the organisation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Name | ++ | False | +True | +['Name[{}]', 'null'] | +
Identifier on the gateway
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Gateway Identifier | ++ | False | +False | +['str', 'null'] | +
The Research Organization Registry (ROR) for the organisation, if applicable
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Research Organization Registry Identifier | ++ | False | +False | +['str', 'null'] | +
This section includes information about data access.
+Please provide details for the data access rights.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access rights | +- The URL of a webpage where the data access request process and/or guidance is provided. If there is more than one access process i.e. industry vs academic please provide both separated by a comma. - If such a resource or the underlying process doesn’t exist, please provide “In Progress”, until both the process and the documentation are ready. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a brief description of the data access services that are available including: environment that is currently available to researchers; additional consultancy and services; any indication of costs associated. If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access service description | +Please provide a brief description of the data access services that are available including: - environment that is currently available to researchers - additional consultancy and services - any indication of costs associated If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers. Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset. |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide link(s) to a webpage or description detailing the service or cost model for processing data access requests.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access request cost | +This information should cover the costs and/or services available to different audiences (i.e. academic, commercial, non-UK, etc.). This can be in the form of text or a URL. | +False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide an indication of the typical processing times based on the types of requests typically received.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Time to dataset access | +- Less than 1 week: Access request process typically processed in less than a week. - 1-2 weeks: Access request process typically processed in one to two weeks. - 2-4 weeks: Access request process typically processed in two to four weeks. - 1-2 months: Access request process typically processed in one to two months. - 2-6 months: Access request process typically processed in two to six months. - More than 6 months: Access request process typically processed in more than six months. - Variable: Access request lead time is variable. - Not applicable: Access request process duration is not applicable. - Other: If the typical timeframe does not fit into the broad ranges i.e. lightweight application vs linked data application, please choose “Other” and indicate the typical timeframe within the description for the dataset. |
+False | +False | +["DeliveryLeadTime['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NOT APPLICABLE','OTHER',null]", 'null'] | +
Please use country code from ISO 3166-1 country codes and the associated ISO 3166-2 for regions, cities, states etc. for the country/state under whose laws the data subjects' data is collected, processed and stored.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Jurisdiction | +A full list of country codes can be found here (alpha-2 column): https://www.iso.org/obp/ui/#search/code/ | +False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Controller | +- Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed. - Notes: For most organisations this will be the same as the Data Custodian of the dataset. If this is not the case, please indicate that there is a different controller. - If there is a different controller please complete the Data Processor attribute to indicate if the Data Custodian is a Processor rather than the Data Controller. - In some cases, there may be multiple Data Controllers i.e. GP data. If this is the case, please indicate the fact in a free-text field and describe the data sharing arrangement or a link to it, so that this can be understood by research users. - Example: NHS England' |
+False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Processor | +A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller. - Notes: Required to complete if the Data Custodian is the Data Processor rather than the Data Controller. - If the Publisher is also the Data Controller please provide “Not Applicable”. - Examples: Not Applicable, SAIL |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Section includes technical attributes for language vocabularies, sizes etc. and gives researchers facts about and processing the underlying data in the dataset.
+Code value of the ontology vocabulary encoding
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Controlled Vocabulary | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+What the vocabulary conforms to.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Conforms To | +- List standardised data models that the dataset has been stored in or transformed to, such as OMOP or FHIR. - If the data is only available in a local format, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition. - HL7 FHIR: https://www.hl7.org/fhir/. - HL7 V2: https://www.hl7.org/implement/standards/product_section.cfm?section=13. - HL7 CDA: https://www.hl7.org/implement/standards/product_section.cfm?section=10. - HL7 CCOW: https://www.hl7.org/implement/standards/product_section.cfm?section=16. - DICOM: https://www.dicomstandard.org/. - I2B2: https://www.i2b2.org/. - IHE: https://www.ihe.net/resources/profiles/. - OMOP: https://www.ohdsi.org/data-standardization/the-common-data-model/. - openEHR: https://www.openehr.org/. - Sentinel: https://www.sentinelinitiative.org/sentinel/data/distributed-database-common-data-model. - PCORnet: https://pcornet.org/data-driven-common-model/. - CDISC: https://www.cdisc.org/standards/data-exchange/odm. - Local: In-house developed data model. - Other: Other standardised data model. - NHS Data Dictionary: https://www.datadictionary.nhs.uk/. - NHS Scotland Data Dictionary: https://www.ndc.scot.nhs.uk/Data-Dictionary/. - NHS Wales Data Dictionary: https://www.datadictionary.wales.nhs.uk/. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Language code(s) of the language of the dataset metadata and underlying data is made available.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Language Code(s) | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Format(s) the dataset can be made available in
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Format | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Metadata for various linkages with datasets and other gateway entities
+??
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is Generated Using | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Any media associated with the Gateway Organisation using a valid URI for the content. This is an opportunity to provide additional context that could be useful for researchers wanting to understand more about the dataset and its relevance to their research question
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Associated Media | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+??
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Uses | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The keystone paper associated with the dataset. Also include a list of known citations, if available and should be links to existing resources where the dataset has been used or referenced.',
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is Reference in | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
URL of any analysis tools or models that have been created for this dataset and are available for further use
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Tools | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Dataset Linkage copied over from
+Indicate if derived datasets or predefined extracts are available and the type of derivation available. Notes. Single or multiple dimensions can be provided as a derived extract alongside the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Derivations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+If the dataset is part of a group or family
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is PartOf | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Dataset is a member of XXX(?)
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is MemberOf | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Links to other datasets.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Linked Datasets | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide the keystone paper associated with the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Investigations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+This section provides an overview of observations of your dataset linked to specific points in time. Multiple observations about the dataset are encouraged to be provided, including multiple observations of the same property at different timepoints. At least one observation is required.
+Please select one of the following broad notes for your measured observation. Indicating whether the measured property is a recording of unique persons, events, findings or scans per modality.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset volume measure | +- Persons: Unique persons recorded in the dataset - Events: Unique events such as procedures and prescriptions within the dataset -Findings: Unique findings included in the dataset such as diagnoses' -Number of scans per modality: Unique scans for a specified imaging method modality (e.g. 12 x-rays) |
+False | +True | +["StatisticalPopulationConstrained['PERSONS','EVENTS','FINDINGS']"] | +
Examples:
+An integer value size of the measured property, such as ‘1000’ for 1000 people in the study or ‘87’ for 87 MRI scans in the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured value | +An integer value size of the measured property, such as ‘1000’ for 1000 people in the study or ‘87’ for 87 MRI scans in the dataset. | +False | +True | +['int'] | +
If required, please provide additional details that help distinguish between similar measured properties within your dataset, for example this is useful when SNOMED CT terms do not provide sufficient detail to distinguish between parts of the dataset population. Limited to 500 characters.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Disambiguating description | +If required please provide additional details that help distinguish between similar measured properties within your dataset, for example this is useful when SNOMED CT terms do not provide sufficient detail to distinguish between parts of the dataset population. | +False | +False | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Provide the date, or datetime that the observation was made. Multiple observations of the same property can be provided, for example an observation of cumulative COVID positive cases by specimen on the 1/1/2021 with a measuredValue of 2000000, and a second observation entry on 8/2/2021 recording a measuredValue of as 3100000.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Observation date | +Provide the date, or datetime that the observation was made. Multiple observations of the same property can be provided, for example an observation of cumulative COVID positive cases by specimen on the 1/1/2021 with a measuredValue of 2000000, and a second observation entry on 8/2/2021 recording a measuredValue of as 3100000. | +False | +True | +['date', 'datetime'] | +
Descriptive term for the observation property measured. For example, people, procedures, x-rays, or diagnosis of type 1 diabetes. This could also be a specific SNOMED CT term.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured property | +Descriptive term for the observation property measured. | +False | +True | +['MeasuredProperty[{}]'] | +
Descriptions of all tables and data elements that can be included in the dataset
+The name of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Name | ++ | False | +True | +['str', 'null'] | +
A description of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Description' | ++ | False | +False | +['str', 'null'] | +
A list of columns contained within a table in a dataset.
+The name of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Name | ++ | False | +True | +['Name[{}]'] | +
The name of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Name | ++ | False | +True | +['str'] | +
A description of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Description | ++ | False | +False | +['str', 'null'] | +
A True or False value, indicating if the field is sensitive or not
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sensitive | ++ | False | +True | +['bool'] | +
values in a dataset
+Unique value in a column .
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value Name | ++ | False | +True | +['Name[{}]'] | +
A description of a unique value in a column.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value Description | ++ | False | +False | +['str', 'null'] | +
The frequency of occurrance of a value in a column
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value Frequency | ++ | False | +False | +['int', 'null'] | +
metedata for tissue samples
+ID of the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| ID | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The type of data that is associated with the samples in the study. Can be several values MIABIS-2.0-13
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Categories | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The biospecimen saved from a biological entity for propagation e.g. testing, diagnostics, treatment or research purposes. Can be several values MIABIS-2.0-14
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Material Type | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Access conditions for the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Conditions | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The type of the sample collection. Can be several values MIABIS-2.0-16
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection Type | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Disease associated with the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Disease | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Storage temperature of the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Storage Temperature | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Age range of the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sample Age Range | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Metadata related to the tissue sample
+ID of the tissue sample metadata
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Metadata ID | ++ | False | +False | +['str', 'null'] | +
Information about the sample donor
+ID of the sample donor
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Donor ID | ++ | False | +False | +['str', 'null'] | +
Sex of the sample donor
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Donor Sex | ++ | False | +False | +['str', 'null'] | +
Date of birth of the sample donor
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Donor birth date | ++ | False | +False | +['date', 'datetime', 'null'] | +
Data categories related to the sample donor
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Donor Data Categories | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Type of the tissue sample
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sample Type | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Storage temperature of the tissue sample
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Storage Temperature | ++ | False | +False | +['str', 'null'] | +
Date when the tissue sample metadata was created
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Creation Date | ++ | False | +False | +['date', 'datetime', 'null'] | +
Ontology code for the anatomical site, this code must match an ICD-0-3 format
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anatomical Site Ontology Code | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Ontology description for the anatomical site
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anatomical Site Ontology Description | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Free text describing the anatomical site
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anatomical Site Free Text | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Diagnosis related to the sample content
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sample Content Diagnosis | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Restrictions on the use of the tissue sample
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Use Restrictions | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
linkage.syntheticDataWebLink: new field for storing internal/external links to synthetic data resources related to the datasetaccessibility.access.accessServiceCategory: new field for categorising if a dataset access is direct, TRE/SDE, etc.Required metadata needed for the GWDM
+Associated identifier (number) that is the BigInt key in our SQL database for the dataset version associated with this metadata
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Gateway Identifier | ++ | False | +True | +['str'] | +
A unique persistent identifier for the metadata version. This is a 128-bit unique identifiers, as 32 hexadecimal digits separated by hyphens
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Gateway Persistent Identifier | ++ | False | +True | +['str'] | +
Datetime stamp of when this metadata version was initially issued
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Metadata Issued Datetime', | ++ | False | +True | +['datetime'] | +
Datetime stamp of when this metadata was last modified
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Last Modified Datetime | ++ | False | +True | +['datetime'] | +
A list of persistent identifiers and version numbers for previous versions of metadata for this dataset
+Version number used for previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision version | ++ | False | +True | +['str'] | +
Examples:
+Some url with a reference to the record of a previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision url | ++ | False | +True | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]"] | +
Examples:
+Dataset metadata version
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Version | ++ | False | +True | +['str'] | +
Examples:
+Summary of metadata describing key pieces of information.
+Title of the dataset limited to 150 characters. It should provide a short description of the dataset and be unique across the gateway. If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. Good titles should summarise the content of the dataset and if relevant, the region the dataset covers.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Title | +- The title should provide a short description of the dataset and be unique across the gateway. - If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. - If an accronym is widely used the dataset name, please add it in brackets () at the end of the title. - Good titles should summarise the content of the dataset and if relevant, the region the dataset covers. - Example: North West London COVID-19 Patient Level Situation Report |
+False | +True | +["TwoHundredFiftyFiveCharacters[{'maxLength': 255, 'minLength': 2, 'type': 'string'}]"] | +
Examples:
+A shorter descriptive title of the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Short Title | ++ | False | +True | +["ShortTitle[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+DOI associated to this dataset. Find out more about DOIs here: https://www.doi.org/the-identifier/what-is-a-doi/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Digital Object Identifier (DOI) for dataset | +- Please note: This is not the DOI of the publication(s) associated with the dataset. - All HDR UK registered datasets should either have a (DOI) or be working towards obtaining one. - If a DOI is available, please provide the DOI. - What happens if I do not have a DOI?: Contact your academic organisation to find out if there is an existing relationship with a DOI provider. If that is not available, sites such as figshare offer free services to mint a DOI for your dataset. Subsequent versions of the Metadata Exchange will provide a DOI minting service. |
+False | +True | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. The optimal length is one paragraph (limited to 255 characters) and effective abstracts should avoid long sentences and abbreviations where possible.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset abstract | +- The abstract should provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. - The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. - Effective abstracts should avoid long sentences and abbreviations where possible. - Note: Researchers will view Titles and the first line of Abstracts (list view) when searching for datasets and choosing whether to explore their content further. - Abstracts should be different from the full description for a dataset. - Example: CPRD Aurum contains primary care data contributed by General Practitioner (GP) practices using EMIS Web® including patient registration information and all care events that GPs have chosen to record as part of their usual medical practice. |
+False | +True | +["LongAbstractText[{'anyOf': [{'maxLength': 5000, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]"] | +
Examples:
+Please provide a list of relevant and specific keywords that can improve the search engine optimisation (SEO) of your dataset as a comma separated list. Notes: Onboarding portal will suggest keywords based on title, abstract and description. We are compiling a standardised list of keywords and synonyms across datasets to make filtering easier for users.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Keywords | +- Please provide relevant and specific keywords that can improve the search engine optimization of your dataset. - Please enter one keyword at a time and click Add New Field to add further keywords. - Text from the title is automatically included in the search, there is no need to include this in the keywords. - Include words that researcher may include in their searches. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Keywords that have been filtered and limited
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Controlled Keywords | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a valid email address that can be used to coordinate data access requests.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Contact point | +Organisations are expected to provide a dedicated email address associated with the data access request process. If no contact point is provided in this field, this field will be defaulted to the teams support email provided in the teams setting. Note: An employee's email address can only be provided on a temporary basis and if one is provided, you must obtain explicit consent for this purpose. |
+False | +True | +['EmailStr', 'null'] | +
Examples:
+Placeholder for dataset type"
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Type | ++ | False | +True | +["DatasetType[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Longer description of the dataset in detail
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Description | ++ | False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+This is the organisation responsible for running or supporting the data access request process, as well as publishing and maintaining the metadata. In most this will be the same as the HDR UK Organisation (Hub or Alliance Member). However, in some cases this will be different i.e. Tissue Directory are an HDR UK Gateway organisation but coordinate activities across a number of data publishers i.e. Cambridge Blood and Stem Cell Biobank.
+Name of the organisation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Name | ++ | False | +True | +['Name[{}]', 'null'] | +
Identifier on the gateway
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Gateway Identifier | ++ | False | +False | +['str', 'null'] | +
The Research Organization Registry (ROR) for the organisation, if applicable
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Research Organization Registry Identifier | ++ | False | +False | +['str', 'null'] | +
Summary population size of the cohort
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Population size | +This number informs a filter for Researchers to differentiate dataset search results based on the number of people in the dataset, and does not pull from the Observations fields. The filter also allows for Researchers to search datasets which have no population size reported, but will not pull any population size captured in the Observations section. | +False | +False | +['int', 'null'] | +
Placeholder for dataset sub-type
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Sub-type | ++ | False | +False | +["DatasetType[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
This information includes attributes for geographical and temporal coverage, cohort details etc. to enable a deeper understanding of the dataset content so that researchers can make decisions about the relevance of the underlying data.
+The geographical area covered by the dataset. It is recommended that links are to entries in one of the recommended standards:
- For locations in the UK: ONS standards
- For locations in other countries: ISO 3166-1 & ISO 3166-2
| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Geographic coverage | +- The geographical area covered by the dataset. - Please provide a valid location. - For locations in the UK, this location should conform to ONS standards. - For locations in other countries we use ISO 3166-1 & ISO 3166-2. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Patient pathway description | +- Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. - This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway. |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
If known, what is the typical time span that a patient appears in the dataset (follow up period). In a prospective cohort study, after baseline information is collected, participants are followed “longitudinally” i.e. new information is collected about them for a period of time afterward. This is known as the “follow up period”. What is the typical time span of follow up, e.g. 1 year, 5 years? If there are multiple cohorts in the dataset with varying follow up periods, please provide the longest follow up period.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Follow-up | +If known, please indicate the typical time span that a patient appears in the dataset (follow up period). -0 - 6 MONTHS: Data typically available for a patient over a 0-6 month period. -6 - 12 MONTHS: Data typically available for a patient over a 6-12 month period. -1 - 10 YEARS: Data typically available for a patient over a 1-10 year period. -> 10 YEARS: Data typically available for a patient for over a 10 year period. -CONTINUOUS: Data for patients is being regularly added to and updated. -UNKNOWN: Timespan is Unknown. -OTHER: Data available for a patient over another time period. |
+False | +False | +["Followup['0 - 6 MONTHS','6 - 12 MONTHS','1 - 10 YEARS','> 10 YEARS','UNKNOWN','CONTINUOUS','OTHER',null]", 'null'] | +
Please indicate the age range in whole years of participants in the dataset. Please provide range in the following format '[min age] – [max age]' where both the minimum and maximum are whole numbers (integers).
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Age Range | ++ | False | +False | +["AgeRange[{'anyOf': [{'pattern': 'Not Known | +
Examples:
+Cohort description: Male, Female, Other
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Gender | +Options are limited to Male/Female/Other. | +False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Cohort description: Blood, Saliva, Urine, Other
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Biological Samples | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Cohort description: Mental health, Cognitive function
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Psychological | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Cohort description: Cardiovascular, Respiratory, Musculoskeletal, Hearing and Vision, Reproductive
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Physical | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Cohort description: Height, Weight, Waist circumference, Hip circumference, Blood pressure
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anthropometric | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Cohort lifestyle habits: Smoking, Physical activity, Dietary habits, Alcohol
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Lifestyle | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Cohort description: Occupation, Family circumstances, Housing, Education, Ethnic group, Marital status, Social support
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Socio-economic | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Provenance information allows researchers to understand data within the context of its origins and can be an indicator of quality, authenticity and timeliness.
+None
+Please indicate the purpose(s) that the dataset was collected.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Purpose of dataset collection | +- Research cohort: Data collected for a defined group of people. - Study: Data collected for a specific research study. - Disease registry: Data collected as part of a disease registry. - Trial: Data collected for as part of a clinical trial. - Care: Data collected as part of routine clinical care. - Audit: Data collected as part of an audit programme. - Administrative: Data collected for administrative and management information purposes. - Financial: Data collected either for payments or for billing. - Statutory: Data collected in compliance with statutory requirements. - Other: Data collected for other purpose. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please indicate the source of the data extraction.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Source of data extraction | +- EPR: Data Extracted from Electronic Patient Record. - Electronic survey: Data has been extracted from electronic surveys. - LIMS: Data has been extracted from a laboratory information management system. - Paper-based: Data has been extracted from paper forms. - Free text NLP: Data has been extracted from unstructured freetext using natural language processing. - Machine generated: Data has been machine generated i.e. imaging. - Other: Data has been extracted by other means. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please indicate the setting(s) where data was collected. Multiple settings may be provided
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection Situation Setting | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
None
+The start of the time period that the dataset provides coverage for. If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Start date | +- The start of the time period that the dataset provides coverage for. - If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information. |
+False | +True | +['date', 'datetime', 'null'] | +
The end of the time period that the dataset provides coverage for. If the dataset is “Continuous” and has no known end date, please state continuous. If there are multiple cohorts in the dataset with varying end dates, please provide the latest date and use the description or the media attribute to provide more information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| End date | +- The end of the time period that the dataset provides coverage for. - If the dataset is “Continuous” and has no known end date, please leave blank. - If there are multiple cohorts in the dataset with varying end dates, please provide the latest date. |
+False | +False | +['date', 'datetime', 'null'] | +
Please indicate the typical time-lag between an event and the data for that event appearing in the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Time lag | +Please indicate the typical time-lag between an event and the data for that event appearing in the dataset. - Less than 1 week: Typical time lag of less than a week. - 1-2 weeks: Typical time-lag of one to two weeks. - 2-4 weeks: Typical time-lag of two to four weeks. - 1-2 months: Typical time-lag of one to two months. - 2-6 months: Typical time-lag of two to six months. - 6 months plus: Typical time-lag of more than six months. - Variable: Variable time-lag. - Not applicable: Not Applicable i.e. static dataset. - Other: Other time-lag. |
+False | +True | +["TimeLag['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NO TIMELAG','NOT APPLICABLE','OTHER',null]"] | +
Please indicate the frequency of distribution release. If a dataset is distributed regularly please choose a distribution release periodicity from the constrained list and indicate the next release date. When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. If a dataset has been published and will remain static please indicate that it is static and indicated when it was released. If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Periodicity | ++ | False | +True | +["Periodicity['STATIC','IRREGULAR','CONTINUOUS','BIENNIAL','ANNUAL','BIANNUAL','QUARTERLY','BIMONTHLY','MONTHLY','BIWEEKLY','WEEKLY','SEMIWEEKLY','DAILY','OTHER',null]"] | +
Date of the latest release of the dataset. If this is a regular release i.e. quarterly, or this is a static dataset please complete this alongside Periodicity. If this is Irregular or Continuously released please leave this blank. Notes: Periodicity and release date will be used to determine when the next release is expected. E.g. if the release date is documented as 01/01/2020 and it is now 20/04/2020 and there is a quarterly release schedule, the latest release will be calculated as 01/04/2020.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Distribution release date | +- Please indicate the frequency the dataset is published. - If a dataset is published regularly please choose a publishing periodicity from the constrained list and indicate the next release date. - When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. - If a dataset has been published and will remain static please indicate that it is static and indicate when it was released. - If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. - If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. - Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/ |
+False | +False | +['date', 'datetime', 'null'] | +
Accessibility information.
+This section includes information about how the data can be used and how it is currently being used.
+Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. NOTE: we have extended the Data Use Ontology to include a value for NO LINKAGE.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data use limitation | +Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. - General research use: This data use limitation indicates that use is allowed for general research use for any research purpose. - Genetic studies only: This data use limitation indicates that use is limited to genetic studies only (i.e., no phenotype-only research). - No general methods research: This data use limitation indicates that use includes methods development research(e.g., development of software or algorithms) only within the bounds of other use limitations. - No restriction: This data use limitation indicates there is no restriction on use. - Research-specific restrictions: This data use limitation indicates that use is limited to studies of a certain research type. - Research use only: This data use limitation indicates that use is limited to research purposes (e.g., does not include its use in clinical care). - No linkage: This data use limitation indicates there is a restriction on linking to any other datasets |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please indicate fit here are any additional conditions set for use if any, multiple requirements may be provided. Please ensure that these restrictions are documented in access rights information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data use requirements | +- Please indicate if there are any additional conditions set for use if any, multiple requirements may be provided. - Please ensure that these restrictions are documented in access rights information. - Collaboration required: This requirement indicates that the requestor must either agree to join a research consortium or collaborate with the primary study investigator(s). - Ethics approval required: This requirement indicates that the requestor must provide documentation of local institutional review board (IRB)/ ethics review board (ERB) approval. - Geographical restrictions: This requirement indicates that use is limited to within a specific geographic region. - Institution-specific restrictions: This requirement indicates that use is limited to use within an approved institution. - Not for profit use: This requirement indicates that use of the data is limited to not-for-profit organizations and not-for-profit use, non-commercial use. - Project-specific restrictions: This requirement indicates that use is limited to use within an approved project. - Publication moratorium: This requirement indicates that requestor agrees not to publish results of studies until a specific date. - Publication required: This requirement indicates that requestor agrees to make results of studies using the data available to the larger scientific community. - Return to database or resource: This requirement indicates that the requestor must return derived/enriched data to the database/resource. - Time limit on use: This requirement indicates that use is approved for a specific number of months. - User-specific restriction: This requirement indicates that use is limited to use by approved users. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide the text that you would like included as part of any citation that credits this dataset. This is typically just the name of the publisher. No employee details should be provided.
+Examples:
+Name of the organisation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Name | ++ | False | +True | +['Name[{}]', 'null'] | +
Identifier on the gateway
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Gateway Identifier | ++ | False | +False | +['str', 'null'] | +
The Research Organization Registry (ROR) for the organisation, if applicable
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Research Organization Registry Identifier | ++ | False | +False | +['str', 'null'] | +
This section includes information about data access.
+Please provide details for the data access rights.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access rights | +- The URL of a webpage where the data access request process and/or guidance is provided. If there is more than one access process i.e. industry vs academic please provide both separated by a comma. - If such a resource or the underlying process doesn’t exist, please provide “In Progress”, until both the process and the documentation are ready. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a brief description of the data access services that are available including: environment that is currently available to researchers; additional consultancy and services; any indication of costs associated. If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access service description | +Please provide a brief description of the data access services that are available including: - environment that is currently available to researchers - additional consultancy and services - any indication of costs associated If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers. Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset. |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide link(s) to a webpage or description detailing the service or cost model for processing data access requests.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access request cost | +This information should cover the costs and/or services available to different audiences (i.e. academic, commercial, non-UK, etc.). This can be in the form of text or a URL. | +False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide an indication of the typical processing times based on the types of requests typically received.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Time to dataset access | +- Less than 1 week: Access request process typically processed in less than a week. - 1-2 weeks: Access request process typically processed in one to two weeks. - 2-4 weeks: Access request process typically processed in two to four weeks. - 1-2 months: Access request process typically processed in one to two months. - 2-6 months: Access request process typically processed in two to six months. - More than 6 months: Access request process typically processed in more than six months. - Variable: Access request lead time is variable. - Not applicable: Access request process duration is not applicable. - Other: If the typical timeframe does not fit into the broad ranges i.e. lightweight application vs linked data application, please choose “Other” and indicate the typical timeframe within the description for the dataset. |
+False | +False | +["DeliveryLeadTime['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NOT APPLICABLE','OTHER',null]", 'null'] | +
Please use country code from ISO 3166-1 country codes and the associated ISO 3166-2 for regions, cities, states etc. for the country/state under whose laws the data subjects' data is collected, processed and stored.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Jurisdiction | +A full list of country codes can be found here (alpha-2 column): https://www.iso.org/obp/ui/#search/code/ | +False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Controller | +- Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed. - Notes: For most organisations this will be the same as the Data Custodian of the dataset. If this is not the case, please indicate that there is a different controller. - If there is a different controller please complete the Data Processor attribute to indicate if the Data Custodian is a Processor rather than the Data Controller. - In some cases, there may be multiple Data Controllers i.e. GP data. If this is the case, please indicate the fact in a free-text field and describe the data sharing arrangement or a link to it, so that this can be understood by research users. - Example: NHS England' |
+False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Processor | +A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller. - Notes: Required to complete if the Data Custodian is the Data Processor rather than the Data Controller. - If the Publisher is also the Data Controller please provide “Not Applicable”. - Examples: Not Applicable, SAIL |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Where access to data come from: TRE/SED, direct access, open acccess, varies based on project.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access/governance requirements | +Select the category which best matches how a Researcher will access the dataset, if approved for access. If the access method changes based on the data required for the project (e.g. the dataset can be shared via secure email if the extract is fully anonymised, but must be accessed via a TRE/SDE if the extract is only pseudonymised) then select 'varies based on project'. | +False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Section includes technical attributes for language vocabularies, sizes etc. and gives researchers facts about and processing the underlying data in the dataset.
+Code value of the ontology vocabulary encoding
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Controlled Vocabulary | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+What the vocabulary conforms to.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Conforms To | +- List standardised data models that the dataset has been stored in or transformed to, such as OMOP or FHIR. - If the data is only available in a local format, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition. - HL7 FHIR: https://www.hl7.org/fhir/. - HL7 V2: https://www.hl7.org/implement/standards/product_section.cfm?section=13. - HL7 CDA: https://www.hl7.org/implement/standards/product_section.cfm?section=10. - HL7 CCOW: https://www.hl7.org/implement/standards/product_section.cfm?section=16. - DICOM: https://www.dicomstandard.org/. - I2B2: https://www.i2b2.org/. - IHE: https://www.ihe.net/resources/profiles/. - OMOP: https://www.ohdsi.org/data-standardization/the-common-data-model/. - openEHR: https://www.openehr.org/. - Sentinel: https://www.sentinelinitiative.org/sentinel/data/distributed-database-common-data-model. - PCORnet: https://pcornet.org/data-driven-common-model/. - CDISC: https://www.cdisc.org/standards/data-exchange/odm. - Local: In-house developed data model. - Other: Other standardised data model. - NHS Data Dictionary: https://www.datadictionary.nhs.uk/. - NHS Scotland Data Dictionary: https://www.ndc.scot.nhs.uk/Data-Dictionary/. - NHS Wales Data Dictionary: https://www.datadictionary.wales.nhs.uk/. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Language code(s) of the language of the dataset metadata and underlying data is made available.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Language Code(s) | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Format(s) the dataset can be made available in
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Format | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Linkage and enrichment.
+??
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is Generated Using | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Any media associated with the Gateway Organisation using a valid URI for the content. This is an opportunity to provide additional context that could be useful for researchers wanting to understand more about the dataset and its relevance to their research question
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Associated Media | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+??
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Uses | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The keystone paper associated with the dataset. Also include a list of known citations, if available and should be links to existing resources where the dataset has been used or referenced.',
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is Reference in | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
URL of any analysis tools or models that have been created for this dataset and are available for further use
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Tools | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Dataset Linkage copied over from
+Indicate if derived datasets or predefined extracts are available and the type of derivation available. Notes. Single or multiple dimensions can be provided as a derived extract alongside the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Derivations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+If the dataset is part of a group or family
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is PartOf | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Dataset is a member of XXX(?)
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is MemberOf | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Links to other datasets.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Linked Datasets | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide the keystone paper associated with the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Investigations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Links to locations of information and or raw downloads of synthetic data associated with this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Synthetic Data Web Links | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
This section provides an overview of observations of your dataset linked to specific points in time. Multiple observations about the dataset are encouraged to be provided, including multiple observations of the same property at different timepoints. At least one observation is required.
+Please select one of the following broad notes for your measured observation. Indicating whether the measured property is a recording of unique persons, events, findings or scans per modality.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset volume measure | +- Persons: Unique persons recorded in the dataset - Events: Unique events such as procedures and prescriptions within the dataset -Findings: Unique findings included in the dataset such as diagnoses' -Number of scans per modality: Unique scans for a specified imaging method modality (e.g. 12 x-rays) |
+False | +True | +["StatisticalPopulationConstrained['PERSONS','EVENTS','FINDINGS']"] | +
Examples:
+An integer value size of the measured property, such as ‘1000’ for 1000 people in the study or ‘87’ for 87 MRI scans in the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured value | +An integer value size of the measured property, such as ‘1000’ for 1000 people in the study or ‘87’ for 87 MRI scans in the dataset. | +False | +True | +['int'] | +
If required, please provide additional details that help distinguish between similar measured properties within your dataset, for example this is useful when SNOMED CT terms do not provide sufficient detail to distinguish between parts of the dataset population. Limited to 500 characters.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Disambiguating description | +If required please provide additional details that help distinguish between similar measured properties within your dataset, for example this is useful when SNOMED CT terms do not provide sufficient detail to distinguish between parts of the dataset population. | +False | +False | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Provide the date, or datetime that the observation was made. Multiple observations of the same property can be provided, for example an observation of cumulative COVID positive cases by specimen on the 1/1/2021 with a measuredValue of 2000000, and a second observation entry on 8/2/2021 recording a measuredValue of as 3100000.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Observation date | +Provide the date, or datetime that the observation was made. Multiple observations of the same property can be provided, for example an observation of cumulative COVID positive cases by specimen on the 1/1/2021 with a measuredValue of 2000000, and a second observation entry on 8/2/2021 recording a measuredValue of as 3100000. | +False | +True | +['date', 'datetime'] | +
Descriptive term for the observation property measured. For example, people, procedures, x-rays, or diagnosis of type 1 diabetes. This could also be a specific SNOMED CT term.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured property | +Descriptive term for the observation property measured. | +False | +True | +['MeasuredProperty[{}]'] | +
Descriptions of all tables and data elements that can be included in the dataset
+The name of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Name | ++ | False | +True | +['str', 'null'] | +
A description of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Description' | ++ | False | +False | +['str', 'null'] | +
A list of columns contained within a table in a dataset.
+The name of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Name | ++ | False | +True | +['Name[{}]'] | +
The name of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Name | ++ | False | +True | +['str'] | +
A description of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Description | ++ | False | +False | +['str', 'null'] | +
A True or False value, indicating if the field is sensitive or not
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sensitive | ++ | False | +True | +['bool'] | +
values in a dataset
+Unique value in a column .
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value Name | ++ | False | +True | +['Name[{}]'] | +
A description of a unique value in a column.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value Description | ++ | False | +False | +['str', 'null'] | +
The frequency of occurrance of a value in a column
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value Frequency | ++ | False | +False | +['int', 'null'] | +
metedata for tissue samples
+ID of the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| ID | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The type of data that is associated with the samples in the study. Can be several values MIABIS-2.0-13
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Categories | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The biospecimen saved from a biological entity for propagation e.g. testing, diagnostics, treatment or research purposes. Can be several values MIABIS-2.0-14
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Material Type | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Access conditions for the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Conditions | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The type of the sample collection. Can be several values MIABIS-2.0-16
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection Type | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Disease associated with the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Disease | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Storage temperature of the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Storage Temperature | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Age range of the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sample Age Range | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Metadata related to the tissue sample
+ID of the tissue sample metadata
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Metadata ID | ++ | False | +False | +['str', 'null'] | +
Information about the sample donor
+ID of the sample donor
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Donor ID | ++ | False | +False | +['str', 'null'] | +
Sex of the sample donor
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Donor Sex | ++ | False | +False | +['str', 'null'] | +
Date of birth of the sample donor
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Donor birth date | ++ | False | +False | +['date', 'datetime', 'null'] | +
Data categories related to the sample donor
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Donor Data Categories | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Type of the tissue sample
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sample Type | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Storage temperature of the tissue sample
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Storage Temperature | ++ | False | +False | +['str', 'null'] | +
Date when the tissue sample metadata was created
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Creation Date | ++ | False | +False | +['date', 'datetime', 'null'] | +
Ontology code for the anatomical site, this code must match an ICD-0-3 format
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anatomical Site Ontology Code | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Ontology description for the anatomical site
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anatomical Site Ontology Description | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Free text describing the anatomical site
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anatomical Site Free Text | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Diagnosis related to the sample content
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sample Content Diagnosis | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Restrictions on the use of the tissue sample
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Use Restrictions | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Required metadata needed for the GWDM
+Associated identifier (number) that is the BigInt key in our SQL database for the dataset version associated with this metadata
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Gateway Identifier | ++ | False | +True | +['str'] | +
A unique persistent identifier for the metadata version. This is a 128-bit unique identifiers, as 32 hexadecimal digits separated by hyphens
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Gateway Persistent Identifier | ++ | False | +True | +['str'] | +
Datetime stamp of when this metadata version was initially issued
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Metadata Issued Datetime | ++ | False | +True | +['datetime'] | +
Datetime stamp of when this metadata was last modified
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Last Modified Datetime | ++ | False | +True | +['datetime'] | +
A list of persistent identifiers and version numbers for previous versions of metadata for this dataset
+Version number used for previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision version | ++ | False | +True | +['str'] | +
Examples:
+Some url with a reference to the record of a previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision url | ++ | False | +True | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]"] | +
Examples:
+Dataset metadata version
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Version | ++ | False | +True | +['str'] | +
Examples:
+Summary of metadata describing key pieces of information.
+The main title of the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Title | +- The title should provide a short description of the dataset and be unique across the gateway. - If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. - If an accronym is widely used the dataset name, please add it in brackets () at the end of the title. - Good titles should summarise the content of the dataset and if relevant, the region the dataset covers. - Example: North West London COVID-19 Patient Level Situation Report |
+False | +True | +["TwoHundredFiftyFiveCharacters[{'maxLength': 255, 'minLength': 2, 'type': 'string'}]"] | +
Examples:
+A shorter descriptive title of the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Short Title | ++ | False | +True | +["ShortTitle[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+DOI associated to this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| DOI Name | +- Please note: This is not the DOI of the publication(s) associated with the dataset. - All HDR UK registered datasets should either have a (DOI) or be working towards obtaining one. - If a DOI is available, please provide the DOI. - What happens if I do not have a DOI?: Contact your academic organisation to find out if there is an existing relationship with a DOI provider. If that is not available, sites such as figshare offer free services to mint a DOI for your dataset. Subsequent versions of the Metadata Exchange will provide a DOI minting service. |
+False | +True | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Longer abstract detailing the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Abstract | +- The abstract should provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. - The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. - Effective abstracts should avoid long sentences and abbreviations where possible. - Note: Researchers will view Titles and the first line of Abstracts (list view) when searching for datasets and choosing whether to explore their content further. - Abstracts should be different from the full description for a dataset. - Example: CPRD Aurum contains primary care data contributed by General Practitioner (GP) practices using EMIS Web® including patient registration information and all care events that GPs have chosen to record as part of their usual medical practice. |
+False | +True | +["LongAbstractText[{'anyOf': [{'maxLength': 5000, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]"] | +
Examples:
+Comma separated key words associated to this dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Keywords | +- Please provide relevant and specific keywords that can improve the search engine optimization of your dataset. - Please enter one keyword at a time and click Add New Field to add further keywords. - Text from the title is automatically included in the search, there is no need to include this in the keywords. - Include words that researcher may include in their searches. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Keywords that have been filtered and limited
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Controlled Keywords | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
email of a person who can be the main contact point of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Contact Point | +Organisations are expected to provide a dedicated email address associated with the data access request process. If no contact point is provided in this field, this field will be defaulted to the teams support email provided in the teams setting. Note: An employee's email address can only be provided on a temporary basis and if one is provided, you must obtain explicit consent for this purpose. |
+False | +True | +['EmailStr', 'null'] | +
Examples:
+What type of dataset is this?
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset type | ++ | False | +True | +["DatasetType[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Longer description of the dataset in detail
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Description | ++ | False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Link to details about the publisher of this dataset
+Name of the organisation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Name | ++ | False | +True | +['Name[{}]', 'null'] | +
Identifier on the gateway
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Gateway Identifier | ++ | False | +False | +['str', 'null'] | +
The Research Organization Registry (ROR) for the organisation, if applicable
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Research Organization Registry Identifier | ++ | False | +False | +['str', 'null'] | +
Summary population size of the cohort
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Population size | +This number informs a filter for Researchers to differentiate dataset search results based on the number of people in the dataset, and does not pull from the Observations fields. The filter also allows for Researchers to search datasets which have no population size reported, but will not pull any population size captured in the Observations section. | +False | +False | +['int', 'null'] | +
Placeholder for dataset sub-type
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Sub-type | ++ | False | +False | +["DatasetType[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Indicate whether this dataset is currently available for Researchers to request access.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset pipeline status | ++ | False | +False | +["Pipeline['Available','Not available']", 'null'] | +
This information includes attributes for geographical and temporal coverage, cohort details etc. to enable a deeper understanding of the dataset content so that researchers can make decisions about the relevance of the underlying data.
+The geographical area covered by the dataset. It is recommended that links are to entries in a well-maintained gazetteer such as https://www.geonames.org/ or https://what3words.com/daring.lion.race.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Geographic Coverage | +- The geographical area covered by the dataset. - Please provide a valid location. - For locations in the UK, this location should conform to ONS standards. - For locations in other countries we use ISO 3166-1 & ISO 3166-2. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Pathway | +- Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. - This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway. |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
If known, what is the typical time span that a patient appears in the dataset (follow up period)
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Followup | +If known, please indicate the typical time span that a patient appears in the dataset (follow up period). -0 - 6 MONTHS: Data typically available for a patient over a 0-6 month period. -6 - 12 MONTHS: Data typically available for a patient over a 6-12 month period. -1 - 10 YEARS: Data typically available for a patient over a 1-10 year period. -> 10 YEARS: Data typically available for a patient for over a 10 year period. -CONTINUOUS: Data for patients is being regularly added to and updated. -UNKNOWN: Timespan is Unknown. -OTHER: Data available for a patient over another time period. |
+False | +False | +["Followup['0 - 6 MONTHS','6 - 12 MONTHS','1 - 10 YEARS','> 10 YEARS','UNKNOWN','CONTINUOUS','OTHER',null]", 'null'] | +
Please indicate the age range in whole years of participants in the dataset. Please provide range in the following format '[min age] – [max age]' where both the minimum and maximum are whole numbers (integers).
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Age Range | ++ | False | +False | +["AgeRange[{'anyOf': [{'pattern': 'Not Known | +
Examples:
+The URL where a Researcher can learn more about the completeness of the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset coverage/completeness/quality | +If your organisation has a publicly available site which contains information on the completeness of a dataset, add that URL here. Example: https://bhfdatasciencecentre.org/dashboard/ |
+False | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Provenance information allows researchers to understand data within the context of its origins and can be an indicator of quality, authenticity and timeliness.
+None
+Please indicate the purpose(s) that the dataset was collected.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Purpose | +- Research cohort: Data collected for a defined group of people. - Study: Data collected for a specific research study. - Disease registry: Data collected as part of a disease registry. - Trial: Data collected for as part of a clinical trial. - Care: Data collected as part of routine clinical care. - Audit: Data collected as part of an audit programme. - Administrative: Data collected for administrative and management information purposes. - Financial: Data collected either for payments or for billing. - Statutory: Data collected in compliance with statutory requirements. - Other: Data collected for other purpose. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please indicate the source of the data extraction
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Source | +- EPR: Data Extracted from Electronic Patient Record. - Electronic survey: Data has been extracted from electronic surveys. - LIMS: Data has been extracted from a laboratory information management system. - Paper-based: Data has been extracted from paper forms. - Free text NLP: Data has been extracted from unstructured freetext using natural language processing. - Machine generated: Data has been machine generated i.e. imaging. - Other: Data has been extracted by other means. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please indicate the setting(s) where data was collected. Multiple settings may be provided
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection Situation Setting | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Indicate whether usage of imaging contrast is captured within the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Image contrast | +If any contrast media or contrast agents were used in creating the images within the dataset and the contrast is known, mark 'Yes'. If this information is not known or not captured, indicate 'Not stated'. If there was no contrast used in the images, mark 'No'. | +False | +False | +["Ternary['Yes','No','Not stated']", 'null'] | +
None
+The start of the time period that the dataset provides coverage for. If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Start Date | +- The start of the time period that the dataset provides coverage for. - If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information. |
+False | +True | +['date', 'datetime', 'null'] | +
The end of the time period that the dataset provides coverage for. If the dataset is “Continuous” and has no known end date, please state continuous. If there are multiple cohorts in the dataset with varying end dates, please provide the latest date and use the description or the media attribute to provide more information.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| End Date | +- The end of the time period that the dataset provides coverage for. - If the dataset is “Continuous” and has no known end date, please leave blank. - If there are multiple cohorts in the dataset with varying end dates, please provide the latest date. |
+False | +False | +['date', 'datetime', 'null'] | +
Please indicate the typical time-lag between an event and the data for that event appearing in the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Time Lag | +Please indicate the typical time-lag between an event and the data for that event appearing in the dataset. - Less than 1 week: Typical time lag of less than a week. - 1-2 weeks: Typical time-lag of one to two weeks. - 2-4 weeks: Typical time-lag of two to four weeks. - 1-2 months: Typical time-lag of one to two months. - 2-6 months: Typical time-lag of two to six months. - 6 months plus: Typical time-lag of more than six months. - Variable: Variable time-lag. - Not applicable: Not Applicable i.e. static dataset. - Other: Other time-lag. |
+False | +True | +["TimeLag['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NO TIMELAG','NOT APPLICABLE','OTHER',null]"] | +
Please indicate the frequency of distribution release. If a dataset is distributed regularly please choose a distribution release periodicity from the constrained list and indicate the next release date. When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. If a dataset has been published and will remain static please indicate that it is static and indicated when it was released. If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Periodicity | ++ | False | +True | +["Periodicity['STATIC','IRREGULAR','CONTINUOUS','BIENNIAL','ANNUAL','BIANNUAL','QUARTERLY','BIMONTHLY','MONTHLY','BIWEEKLY','WEEKLY','SEMIWEEKLY','DAILY','OTHER',null]"] | +
Date of the latest release of the dataset. If this is a regular release i.e. quarterly, or this is a static dataset please complete this alongside Periodicity. If this is Irregular or Continuously released please leave this blank. Notes: Periodicity and release date will be used to determine when the next release is expected. E.g. if the release date is documented as 01/01/2020 and it is now 20/04/2020 and there is a quarterly release schedule, the latest release will be calculated as 01/04/2020.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Release Date | +- Please indicate the frequency the dataset is published. - If a dataset is published regularly please choose a publishing periodicity from the constrained list and indicate the next release date. - When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. - If a dataset has been published and will remain static please indicate that it is static and indicate when it was released. - If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. - If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. - Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/ |
+False | +False | +['date', 'datetime', 'null'] | +
Accessibility information allows researchers to understand access, usage, limitations, formats, standards and linkage or interoperability with toolsets.
+This section includes information about how the data can be used and how it is currently being used
+Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. NOTE: we have extended the DUO to include a value for NO LINKAGE
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Use Limitation | +Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. - General research use: This data use limitation indicates that use is allowed for general research use for any research purpose. - Genetic studies only: This data use limitation indicates that use is limited to genetic studies only (i.e., no phenotype-only research). - No general methods research: This data use limitation indicates that use includes methods development research(e.g., development of software or algorithms) only within the bounds of other use limitations. - No restriction: This data use limitation indicates there is no restriction on use. - Research-specific restrictions: This data use limitation indicates that use is limited to studies of a certain research type. - Research use only: This data use limitation indicates that use is limited to research purposes (e.g., does not include its use in clinical care). - No linkage: This data use limitation indicates there is a restriction on linking to any other datasets |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please indicate fit here are any additional conditions set for use if any, multiple requirements may be provided. Please ensure that these restrictions are documented in access rights information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Use Requirements | +- Please indicate if there are any additional conditions set for use if any, multiple requirements may be provided. - Please ensure that these restrictions are documented in access rights information. - Collaboration required: This requirement indicates that the requestor must either agree to join a research consortium or collaborate with the primary study investigator(s). - Ethics approval required: This requirement indicates that the requestor must provide documentation of local institutional review board (IRB)/ ethics review board (ERB) approval. - Geographical restrictions: This requirement indicates that use is limited to within a specific geographic region. - Institution-specific restrictions: This requirement indicates that use is limited to use within an approved institution. - Not for profit use: This requirement indicates that use of the data is limited to not-for-profit organizations and not-for-profit use, non-commercial use. - Project-specific restrictions: This requirement indicates that use is limited to use within an approved project. - Publication moratorium: This requirement indicates that requestor agrees not to publish results of studies until a specific date. - Publication required: This requirement indicates that requestor agrees to make results of studies using the data available to the larger scientific community. - Return to database or resource: This requirement indicates that the requestor must return derived/enriched data to the database/resource. - Time limit on use: This requirement indicates that use is approved for a specific number of months. - User-specific restriction: This requirement indicates that use is limited to use by approved users. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide the text that you would like included as part of any citation that credits this dataset. This is typically just the name of the publisher. No employee details should be provided.'
+Examples:
+Name of the organisation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Name | ++ | False | +True | +['Name[{}]', 'null'] | +
Identifier on the gateway
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Gateway Identifier | ++ | False | +False | +['str', 'null'] | +
The Research Organization Registry (ROR) for the organisation, if applicable
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Research Organization Registry Identifier | ++ | False | +False | +['str', 'null'] | +
This section includes information about data access
+Please provide details for the data access rights
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Rights | +- The URL of a webpage where the data access request process and/or guidance is provided. If there is more than one access process i.e. industry vs academic please provide both separated by a comma. - If such a resource or the underlying process doesn’t exist, please provide “In Progress”, until both the process and the documentation are ready. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a brief description of the data access services that are available including: environment that is currently available to researchers;additional consultancy and services;any indication of costs associated. If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Service | +Please provide a brief description of the data access services that are available including: - environment that is currently available to researchers - additional consultancy and services - any indication of costs associated If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers. Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset. |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide link(s) to a webpage detailing the commercial model for processing data access requests for the organisation (if available) Definition: Indication of commercial model or cost (in GBP) for processing each data access request by the data custodian.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Access Request Cost | +This information should cover the costs and/or services available to different audiences (i.e. academic, commercial, non-UK, etc.). This can be in the form of text or a URL. | +False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide an indication of the typical processing times based on the types of requests typically received.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Request Duration | +- Less than 1 week: Access request process typically processed in less than a week. - 1-2 weeks: Access request process typically processed in one to two weeks. - 2-4 weeks: Access request process typically processed in two to four weeks. - 1-2 months: Access request process typically processed in one to two months. - 2-6 months: Access request process typically processed in two to six months. - More than 6 months: Access request process typically processed in more than six months. - Variable: Access request lead time is variable. - Not applicable: Access request process duration is not applicable. - Other: If the typical timeframe does not fit into the broad ranges i.e. lightweight application vs linked data application, please choose “Other” and indicate the typical timeframe within the description for the dataset. |
+False | +False | +["DeliveryLeadTime['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NOT APPLICABLE','OTHER',null]", 'null'] | +
Please use country code from ISO 3166-1 country codes and the associated ISO 3166-2 for regions, cities, states etc. for the country/state under whose laws the data subjects' data is collected, processed and stored.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Jurisdiction | +A full list of country codes can be found here (alpha-2 column): https://www.iso.org/obp/ui/#search/code/ | +False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Controller | +- Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed. - Notes: For most organisations this will be the same as the Data Custodian of the dataset. If this is not the case, please indicate that there is a different controller. - If there is a different controller please complete the Data Processor attribute to indicate if the Data Custodian is a Processor rather than the Data Controller. - In some cases, there may be multiple Data Controllers i.e. GP data. If this is the case, please indicate the fact in a free-text field and describe the data sharing arrangement or a link to it, so that this can be understood by research users. - Example: NHS England' |
+False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Processor | +A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller. - Notes: Required to complete if the Data Custodian is the Data Processor rather than the Data Controller. - If the Publisher is also the Data Controller please provide “Not Applicable”. - Examples: Not Applicable, SAIL |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Where access to data come from: TRE/SED, direct access, open acccess, varies based on project.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access/governance requirements | +Select the category which best matches how a Researcher will access the dataset, if approved for access. If the access method changes based on the data required for the project (e.g. the dataset can be shared via secure email if the extract is fully anonymised, but must be accessed via a TRE/SDE if the extract is only pseudonymised) then select 'varies based on project'. | +False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Indication of the application type to enable research access.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access mode | +Indicate whether a Researcher will need to join a consortium to enable access to the dataset, or if a Researcher will need to submit an application which describes a specific project and required dataset fields required. | +False | +False | +["AccessMode['Join research consortium','New project']", 'null'] | +
Section includes technical attributes for language vocabularies, sizes etc. and gives researchers facts about and processing the underlying data in the dataset.
+Code value of the ontology vocabulary encoding
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Controlled Vocabulary | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+What the vocabulary conforms to.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Conforms To | +- List standardised data models that the dataset has been stored in or transformed to, such as OMOP or FHIR. - If the data is only available in a local format, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition. - HL7 FHIR: https://www.hl7.org/fhir/. - HL7 V2: https://www.hl7.org/implement/standards/product_section.cfm?section=13. - HL7 CDA: https://www.hl7.org/implement/standards/product_section.cfm?section=10. - HL7 CCOW: https://www.hl7.org/implement/standards/product_section.cfm?section=16. - DICOM: https://www.dicomstandard.org/. - I2B2: https://www.i2b2.org/. - IHE: https://www.ihe.net/resources/profiles/. - OMOP: https://www.ohdsi.org/data-standardization/the-common-data-model/. - openEHR: https://www.openehr.org/. - Sentinel: https://www.sentinelinitiative.org/sentinel/data/distributed-database-common-data-model. - PCORnet: https://pcornet.org/data-driven-common-model/. - CDISC: https://www.cdisc.org/standards/data-exchange/odm. - Local: In-house developed data model. - Other: Other standardised data model. - NHS Data Dictionary: https://www.datadictionary.nhs.uk/. - NHS Scotland Data Dictionary: https://www.ndc.scot.nhs.uk/Data-Dictionary/. - NHS Wales Data Dictionary: https://www.datadictionary.wales.nhs.uk/. |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Language code(s) of the language of the dataset metadata and underlying data is made available.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Language Code(s) | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Format(s) the dataset can be made available in
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Format | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Metadata for various linkages with datasets and other gateway entities
+??
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is Generated Using | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Any media associated with the Gateway Organisation using a valid URI for the content. This is an opportunity to provide additional context that could be useful for researchers wanting to understand more about the dataset and its relevance to their research question
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Associated Media | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+??
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Uses | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The keystone paper associated with the dataset. Also include a list of known citations, if available and should be links to existing resources where the dataset has been used or referenced.',
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is Reference in | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
URL of any analysis tools or models that have been created for this dataset and are available for further use
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Tools | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Dataset Linkage copied over from
+Indicate if derived datasets or predefined extracts are available and the type of derivation available. Notes. Single or multiple dimensions can be provided as a derived extract alongside the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Derivations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+If the dataset is part of a group or family
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is PartOf | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Dataset is a member of XXX(?)
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Is MemberOf | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Links to other datasets.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Linked Datasets | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide the keystone paper associated with the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Investigations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Links to locations of information and or raw downloads of synthetic data associated with this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Synthetic Data Web Links | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
DOIs for publications which describe the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Publication about the dataset | ++ | True | +False | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]"] | +
DOIs for publications which use the dataset for analysis.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Publication using the dataset | ++ | True | +False | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]"] | +
Multiple observations about the dataset may be provided and users are expected to provide at least one observation
(1..*). We will be supporting the schema.org observation model (https://schema.org/Observation) with default values. Users will be encouraged to provide their own statistical populations as the project progresses.
Example:
<b> Statistical Population 1
</b> type: StatisticalPopulation populationType: Persons numConstraints: 0
<b> Statistical Population 2 </b> type: StatisticalPopulation populationType: Events numConstraints: 0 <b> Statistical Population 3 </b> type: StatisticalPopulation populationType: Findings numConstraints: 0 typeOf: Observation observedNode: <b> Statistical Population 1 </b> measuredProperty: count measuredValue: 32937 observationDate: “2017”"
Please select one of the following statistical populations for you observation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Statistical Population | +- Persons: Unique persons recorded in the dataset - Events: Unique events such as procedures and prescriptions within the dataset -Findings: Unique findings included in the dataset such as diagnoses' -Number of scans per modality: Unique scans for a specified imaging method modality (e.g. 12 x-rays) |
+False | +True | +["StatisticalPopulationConstrainedV2['Person','Event','Findings','Number of scans per modality']"] | +
Examples:
+Please provide the population size associated with the population type the dataset i.e. 1000 people in a study, or 87 images (MRI) of Knee Usage Note: Used with Statistical Population, which specifies the type of the population in the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured Value | +An integer value size of the measured property, such as ‘1000’ for 1000 people in the study or ‘87’ for 87 MRI scans in the dataset. | +False | +True | +['int'] | +
If SNOMED CT term does not provide sufficient detail, please provide a description that disambiguates the population type.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Disambiguating Description | +If required please provide additional details that help distinguish between similar measured properties within your dataset, for example this is useful when SNOMED CT terms do not provide sufficient detail to distinguish between parts of the dataset population. | +False | +False | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide the date that the observation was made. Some datasets may be continuously updated and the number of records will change regularly, so the observation date provides users with the date that the analysis or query was run to generate the particular observation. Multiple observations can be made i.e. an observation of cumulative COVID positive cases by specimen on the 1/1/2021 could be 2M. On the 8/1/2021 a new observation could be 2.1M. Users can add multiple observations.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Observation Date | +Provide the date, or datetime that the observation was made. Multiple observations of the same property can be provided, for example an observation of cumulative COVID positive cases by specimen on the 1/1/2021 with a measuredValue of 2000000, and a second observation entry on 8/2/2021 recording a measuredValue of as 3100000. | +False | +True | +['date', 'datetime'] | +
Initially this will be defaulted to "COUNT"
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured Property | +Descriptive term for the observation property measured. | +False | +True | +['MeasuredProperty[{}]'] | +
Descriptions of all tables and data elements that can be included in the dataset
+The name of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Name | ++ | False | +True | +['str', 'null'] | +
A description of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Description' | ++ | False | +False | +['str', 'null'] | +
A list of columns contained within a table in a dataset.
+The name of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Name | ++ | False | +True | +['Name[{}]'] | +
The name of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Name | ++ | False | +True | +['str'] | +
A description of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Description | ++ | False | +False | +['str', 'null'] | +
A True or False value, indicating if the field is sensitive or not
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sensitive | ++ | False | +True | +['bool'] | +
values in a dataset
+Unique value in a column .
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value Name | ++ | False | +True | +['Name[{}]'] | +
A description of a unique value in a column.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value Description | ++ | False | +False | +['str', 'null'] | +
The frequency of occurrance of a value in a column
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value Frequency | ++ | False | +False | +['int', 'null'] | +
metedata for tissue samples
+ID of the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| ID | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The type of data that is associated with the samples in the study. Can be several values MIABIS-2.0-13
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Categories | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The biospecimen saved from a biological entity for propagation e.g. testing, diagnostics, treatment or research purposes. Can be several values MIABIS-2.0-14
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Material Type | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Access conditions for the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Conditions | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The type of the sample collection. Can be several values MIABIS-2.0-16
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection Type | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Disease associated with the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Disease | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Storage temperature of the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Storage Temperature | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Age range of the tissue sample collection
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sample Age Range | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Metadata related to the tissue sample
+ID of the tissue sample metadata
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Metadata ID | ++ | False | +False | +['str', 'null'] | +
Information about the sample donor
+ID of the sample donor
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Donor ID | ++ | False | +False | +['str', 'null'] | +
Sex of the sample donor
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Donor Sex | ++ | False | +False | +['str', 'null'] | +
Date of birth of the sample donor
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Donor birth date | ++ | False | +False | +['date', 'datetime', 'null'] | +
Data categories related to the sample donor
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Donor Data Categories | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Type of the tissue sample
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sample Type | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Storage temperature of the tissue sample
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Storage Temperature | ++ | False | +False | +['str', 'null'] | +
Date when the tissue sample metadata was created
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Creation Date | ++ | False | +False | +['date', 'datetime', 'null'] | +
Ontology code for the anatomical site, this code must match an ICD-0-3 format
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anatomical Site Ontology Code | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Ontology description for the anatomical site
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anatomical Site Ontology Description | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Free text describing the anatomical site
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anatomical Site Free Text | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Diagnosis related to the sample content
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sample Content Diagnosis | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Restrictions on the use of the tissue sample
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Use Restrictions | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
System dataset identifier
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset identifier | ++ | False | +True | +["Uuidv4[{'maxLength': 36, 'minLength': 36, 'pattern': '^[a-fA-F0-9]{8}-[a-fA-F0-9]{4}-[a-fA-F0-9]{4}-[a-fA-F0-9]{4}-[a-fA-F0-9]{12}$', 'type': 'string'}]", "Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Dataset metadata version
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Version | ++ | False | +True | +["Semver[{'pattern': '^([0-9]+)\\.([0-9]+)\\.([0-9]+)$', 'type': 'string'}]"] | +
Examples:
+A list of persistent identifiers and version numbers for previous versions of metadata for this dataset
+Version number used for previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision version | ++ | False | +True | +["Semver[{'pattern': '^([0-9]+)\\.([0-9]+)\\.([0-9]+)$', 'type': 'string'}]"] | +
Examples:
+Some url with a reference to the record of a previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision url | ++ | False | +True | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Datetime stamp of when this metadata version was initially issued
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Metadata Issued Datetime | ++ | False | +True | +['datetime'] | +
Datetime stamp of when this metadata was last modified
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Last Modified Datetime | ++ | False | +True | +['datetime'] | +
Summary of metadata describing key pieces of information.
+Title of the dataset limited to 150 characters. It should provide a short description of the dataset and be unique across the gateway. If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. Please avoid acronyms wherever possible. Good titles should summarise the content of the dataset and if relevant, the region the dataset covers.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Title | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"] | +
Examples:
+Provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. The optimal length is one paragraph (limited to 255 characters) and effective abstracts should avoid long sentences and abbreviations where possible
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Abstract | ++ | False | +True | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+This is the organisation responsible for running or supporting the data access request process, as well as publishing and maintaining the metadata. In most this will be the same as the HDR UK Organisation (Hub or Alliance Member). However, in some cases this will be different i.e. Tissue Directory are an HDR UK Gateway organisation but coordinate activities across a number of data publishers i.e. Cambridge Blood and Stem Cell Biobank.
+Please provide a Grid.ac identifier (see https://www.grid.ac/institutes) for your organisation. If your organisation does not have a Grid.ac identifier please use the “suggest and institute” function here: https://www.grid.ac/institutes#
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Identifier | ++ | False | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Name of the organisation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Name | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"] | +
Please provide a logo associated with the Gateway Organisation using a valid URL. The following formats will be accepted .jpg, .png or .svg.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Logo | ++ | False | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a URL that describes the organisation.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Description | ++ | False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Organisation contact point(s)
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Contact Point | ++ | False | +True | +["EmailAddress[{'anyOf': [{'format': 'email', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.EmailAddress.EmailAddress]]', 'null'] | +
Please indicate if the organisation is an Alliance Member or a Hub.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Membership | ++ | False | +False | +["MemberOf['HUB','ALLIANCE','OTHER','NCS']", 'null'] | +
Please provide a valid email address that can be used to coordinate data access requests with the publisher. Organisations are expected to provide a dedicated email address associated with the data access request process. Notes- An employee's email address can only be provided on a temporary basis and if one is provided an explicit consent must be obtained for this purpose. Gateway Feature: If no contact point is provided in this field, this field will be defaulted to the teams support email provided in the teams setting.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Contact Point | ++ | False | +True | +["EmailAddress[{'anyOf': [{'format': 'email', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide a list of relevant and specific keywords that can improve the SEO of your dataset as a comma separated list. Notes: Onboarding portal will suggest keywords based on title, abstract and description. We are compiling a standardised list of keywords and synonyms across datasets to make filtering easier for users.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Keywords | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.OneHundredFiftyCharacters.OneHundredFiftyCharacters]', 'null'] | +
Examples:
+Alternate dataset identifiers or local identifiers
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Alternate dataset identifiers | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.ShortDescription.ShortDescription]]', 'null'] | +
DOI associated to this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| DOI Name | ++ | False | +False | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Documentation can include a rich text description of the dataset or links to media such as documents, images, presentations, videos or links to data dictionaries, profiles or dashboards. Organisations are required to confirm that they have permission to distribute any additional media.
+A free-text description of the dataset. Gateway Feature: Keywords and text may be extracted out of the description and index for search
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Description | ++ | False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide any media associated with the Gateway Organisation using a valid URI for the content. This is an opportunity to provide additional context that could be useful for researchers wanting to understand more about the dataset and its relevance to their research question. The following formats will be accepted .jpg, .png or .svg, .pdf, .xslx or .docx. Note: media asset can be hosted by the organisation or uploaded using the onboarding portal.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Associated Media | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Examples:
+Please complete only if the dataset is part of a group or family
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Group | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Union[hdr_schemata.definitions.HDRUK.Url.Url, NoneType, hdr_schemata.definitions.HDRUK.OneHundredFiftyCharacters.OneHundredFiftyCharacters, hdr_schemata.definitions.HDRUK.IsPartOfEnum.IsPartOfEnum]]', 'null'] | +
Examples:
+This information includes attributes for geographical and temporal coverage, cohort details etc. to enable a deeper understanding of the dataset content so that researchers can make decisions about the relevance of the underlying data.
+The geographical area covered by the dataset. It is recommended that links are to entries in a well-maintained gazetteer such as https://www.geonames.org/ or https://what3words.com/daring.lion.race.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Geographic Coverage | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Examples:
+Please indicate the age range in whole years of participants in the dataset. Please provide range in the following format '[min age] – [max age]' where both the minimum and maximum are whole numbers (integers).
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Age Range | ++ | False | +False | +["AgeRange[{'anyOf': [{'pattern': 'Not Known | +
Examples:
+Availability of physical samples associated with the dataset. If samples are available, please indicate the types of samples that are available. More than one type may be provided. If sample are not yet available, please provide “AVAILABILITY TO BE CONFIRMED”. If samples are not available, then please provide “NOT AVAILABLE”.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Physical Sample Availability | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List', 'null'] | +
Examples:
+If known, what is the typical time span that a patient appears in the dataset (follow up period)
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Followup | ++ | False | +False | +["Followup['0 - 6 MONTHS','6 - 12 MONTHS','1 - 10 YEARS','> 10 YEARS','UNKNOWN','CONTINUOUS','OTHER',null]", 'null'] | +
Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Pathway | ++ | False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Provenance information allows researchers to understand data within the context of its origins and can be an indicator of quality, authenticity and timeliness.
+Coverate by origin (geographical and situations)
+Please indicate the purpose(s) that the dataset was collected.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Purpose | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Purpose.Purpose]', 'null'] | +
Please indicate the source of the data extraction
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Source | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Source.Source]', 'null'] | +
Please indicate the setting(s) where data was collected. Multiple settings may be provided
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection Situation Setting | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Setting.Setting]', 'null'] | +
Dates and other temporal coverage information
+Please indicate the frequency of distribution release. If a dataset is distributed regularly please choose a distribution release periodicity from the constrained list and indicate the next release date. When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. If a dataset has been published and will remain static please indicate that it is static and indicated when it was released. If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Periodicity | ++ | False | +True | +["Periodicity['STATIC','IRREGULAR','CONTINUOUS','BIENNIAL','ANNUAL','BIANNUAL','QUARTERLY','BIMONTHLY','MONTHLY','BIWEEKLY','WEEKLY','SEMIWEEKLY','DAILY','OTHER',null]"] | +
Date of the latest release of the dataset. If this is a regular release i.e. quarterly, or this is a static dataset please complete this alongside Periodicity. If this is Irregular or Continuously released please leave this blank. Notes: Periodicity and release date will be used to determine when the next release is expected. E.g. if the release date is documented as 01/01/2020 and it is now 20/04/2020 and there is a quarterly release schedule, the latest release will be calculated as 01/04/2020.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Release Date | ++ | False | +False | +['date', 'datetime', 'null'] | +
The start of the time period that the dataset provides coverage for. If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Start Date | ++ | False | +True | +['date', 'datetime', 'null'] | +
The end of the time period that the dataset provides coverage for. If the dataset is “Continuous” and has no known end date, please state continuous. If there are multiple cohorts in the dataset with varying end dates, please provide the latest date and use the description or the media attribute to provide more information.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| End Date | ++ | False | +False | +['date', 'datetime', "EndDateEnum['CONTINUOUS',null]", 'null'] | +
Please indicate the typical time-lag between an event and the data for that event appearing in the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Time Lag | ++ | False | +True | +["TimeLag['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NO TIMELAG','NOT APPLICABLE','OTHER',null]"] | +
Accessibility information allows researchers to understand access, usage, limitations, formats, standards and linkage or interoperability with toolsets.
+This section includes information about how the data can be used and how it is currently being used
+Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. NOTE: we have extended the DUO to include a value for NO LINKAGE
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Use Limitation | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.DataUseLimitation.DataUseLimitation]', 'null'] | +
Please indicate fit here are any additional conditions set for use if any, multiple requirements may be provided. Please ensure that these restrictions are documented in access rights information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Use Requirements | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.DataUseRequirements.DataUseRequirements]', 'null'] | +
Please provide the text that you would like included as part of any citation that credits this dataset. This is typically just the name of the publisher. No employee details should be provided.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Citation Requirements' | ++ | False | +False | +["ShortDescription[{'anyOf': [{'maxLength': 1000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.ShortDescription.ShortDescription]]', 'null'] | +
None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Investigations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Please provide the keystone paper associated with the dataset. Also include a list of known citations, if available and should be links to existing resources where the dataset has been used or referenced. Please provide multiple entries, or if you are using a csv upload please provide them as a tab separated list.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Citations | ++ | False | +False | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'str', 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Doi.Doi]]', 'null'] | +
This section includes information about data access
+Please provide details for the data access rights
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Rights | ++ | False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a brief description of the data access services that are available including: environment that is currently available to researchers;additional consultancy and services;any indication of costs associated. If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Service | ++ | False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide link(s) to a webpage detailing the commercial model for processing data access requests for the organisation (if available) Definition: Indication of commercial model or cost (in GBP) for processing each data access request by the data custodian.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Access Request Cost | ++ | False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Please provide an indication of the typical processing times based on the types of requests typically received.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Request Duration | ++ | False | +False | +["DeliveryLeadTime['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NOT APPLICABLE','OTHER',null]", 'null'] | +
Please use country code from ISO 3166-1 country codes and the associated ISO 3166-2 for regions, cities, states etc. for the country/state under whose laws the data subjects' data is collected, processed and stored.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Jurisdiction | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Isocountrycode.Isocountrycode]', 'null'] | +
Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Controller | ++ | False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Processor | ++ | False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Section includes technical attributes for language vocabularies, sizes etc. and gives researchers facts about and processing the underlying data in the dataset.
+List any relevant terminologies / ontologies / controlled vocabularies, such as ICD 10 Codes, NHS Data Dictionary National Codes or SNOMED CT International, that are being used by the dataset. If the controlled vocabularies are local standards, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition. Notes: More than one vocabulary may be provided.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Controlled Vocabulary | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.ControlledVocabulary.ControlledVocabulary]', 'null'] | +
List standardised data models that the dataset has been stored in or transformed to, such as OMOP or FHIR. If the data is only available in a local format, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Conforms To | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.StandardisedDataModels.StandardisedDataModels]', 'null'] | +
Examples:
+This should list all the languages in which the dataset metadata and underlying data is made available.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Language | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Language.Language]', 'null'] | +
If multiple formats are available please specify. See application, audio, image, message, model, multipart, text, video, https://www.iana.org/assignments/media-types/media-types.xhtml Note: If your file format is not included in the current list of formats, please indicate other. If you are using the HOP you will be directed to a service desk page where you can request your additional format. If not please go to: https://metadata.atlassian.net/servicedesk/customer/portal/4 to request your format.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Format | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Format.Format]', 'null'] | +
This section includes information about related datasets that may have previously been linked, as well as indicating if there is the opportunity to link to other datasets in the future. If a dataset has been enriched and/or derivations, scores and existing tools are available this section allows providers to indicate this to researchers.
+If applicable, please provide the DOI of other datasets that have previously been linked to this dataset and their availability. If no DOI is available, please provide the title of the datasets that can be linked, where possible using the same title of a dataset previously onboarded to the HOP. Note: If all the datasets from Gateway organisation can be linked please indicate “ALL” and the onboarding portal will automate linkage across the datasets submitted.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Linked Datasets | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Union[hdr_schemata.definitions.HDRUK.Url.Url, NoneType, hdr_schemata.definitions.HDRUK.OneHundredFiftyCharacters.OneHundredFiftyCharacters]]', 'null'] | +
Indicate if derived datasets or predefined extracts are available and the type of derivation available. Notes. Single or multiple dimensions can be provided as a derived extract alongside the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Derivations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.AbstractText.AbstractText]]', 'null'] | +
Please provide the URL of any analysis tools or models that have been created for this dataset and are available for further use. Multiple tools may be provided. Note: We encourage users to adopt a model along the lines of https://www.ga4gh.org/news/tool-registry-service-api-enabling-an-interoperable-library-of-genomics-analysis-tools/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Tools | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Multiple observations about the dataset may be provided and users are expected to provide at least one observation
(1..*). We will be supporting the schema.org observation model (https://schema.org/Observation) with default values. Users will be encouraged to provide their own statistical populations as the project progresses.
Example:
<b> Statistical Population 1
</b> type: StatisticalPopulation populationType: Persons numConstraints: 0
<b> Statistical Population 2 </b> type: StatisticalPopulation populationType: Events numConstraints: 0 <b> Statistical Population 3 </b> type: StatisticalPopulation populationType: Findings numConstraints: 0 typeOf: Observation observedNode: <b> Statistical Population 1 </b> measuredProperty: count measuredValue: 32937 observationDate: “2017”"
Please select one of the following statistical populations for you observation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Statistical Population | ++ | False | +True | +["StatisticalPopulationConstrained['PERSONS','EVENTS','FINDINGS']"] | +
Examples:
+Please provide the population size associated with the population type the dataset i.e. 1000 people in a study, or 87 images (MRI) of Knee Usage Note: Used with Statistical Population, which specifies the type of the population in the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured Value | ++ | False | +True | +['int'] | +
If SNOMED CT term does not provide sufficient detail, please provide a description that disambiguates the population type.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Disambiguating Description | ++ | False | +False | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide the date that the observation was made. Some datasets may be continuously updated and the number of records will change regularly, so the observation date provides users with the date that the analysis or query was run to generate the particular observation. Multiple observations can be made i.e. an observation of cumulative COVID positive cases by specimen on the 1/1/2021 could be 2M. On the 8/1/2021 a new observation could be 2.1M. Users can add multiple observations.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Observation Date | ++ | False | +True | +['date', 'datetime'] | +
Initially this will be defaulted to "COUNT"
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured Property | ++ | False | +True | +['MeasuredProperty[{}]'] | +
Structural metadata about tables, columns and values
+The name of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Name | ++ | False | +True | +['str', 'null'] | +
The name of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Name | ++ | False | +False | +['str', 'null'] | +
The name of a table in a dataset.
+The name of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Name | ++ | False | +True | +['Name[{}]'] | +
The data type of values in the column
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Type | ++ | False | +True | +['str'] | +
A description of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Description | ++ | False | +False | +['str', 'null'] | +
A True or False value, indicating if the field is sensitive or not
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sensitive | ++ | False | +True | +['bool'] | +
provenance.temporal.accrualPeriodicity --> provenance.temporal.publishingFrequencySystem dataset identifier
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset identifier | ++ | False | +True | +["Uuidv4[{'maxLength': 36, 'minLength': 36, 'pattern': '^[a-fA-F0-9]{8}-[a-fA-F0-9]{4}-[a-fA-F0-9]{4}-[a-fA-F0-9]{4}-[a-fA-F0-9]{12}$', 'type': 'string'}]", "Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Dataset metadata version
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Version | ++ | False | +True | +["Semver[{'pattern': '^([0-9]+)\\.([0-9]+)\\.([0-9]+)$', 'type': 'string'}]"] | +
Examples:
+A list of persistent identifiers and version numbers for previous versions of metadata for this dataset
+Version number used for previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision version | ++ | False | +True | +["Semver[{'pattern': '^([0-9]+)\\.([0-9]+)\\.([0-9]+)$', 'type': 'string'}]"] | +
Examples:
+Some url with a reference to the record of a previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision url | ++ | False | +True | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Datetime stamp of when this metadata version was initially issued
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Metadata Issued Datetime | ++ | False | +True | +['datetime'] | +
Datetime stamp of when this metadata was last modified
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Last Modified Datetime | ++ | False | +True | +['datetime'] | +
Summary of metadata describing key pieces of information.
+Title of the dataset limited to 150 characters. It should provide a short description of the dataset and be unique across the gateway. If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. Please avoid acronyms wherever possible. Good titles should summarise the content of the dataset and if relevant, the region the dataset covers.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Title | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"] | +
Examples:
+Provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. The optimal length is one paragraph (limited to 255 characters) and effective abstracts should avoid long sentences and abbreviations where possible
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Abstract | ++ | False | +True | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+This is the organisation responsible for running or supporting the data access request process, as well as publishing and maintaining the metadata. In most this will be the same as the HDR UK Organisation (Hub or Alliance Member). However, in some cases this will be different i.e. Tissue Directory are an HDR UK Gateway organisation but coordinate activities across a number of data publishers i.e. Cambridge Blood and Stem Cell Biobank.
+Please provide a Grid.ac identifier (see https://www.grid.ac/institutes) for your organisation. If your organisation does not have a Grid.ac identifier please use the “suggest and institute” function here: https://www.grid.ac/institutes#
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Identifier | ++ | False | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Name of the organisation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Name | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"] | +
Please provide a logo associated with the Gateway Organisation using a valid URL. The following formats will be accepted .jpg, .png or .svg.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Logo | ++ | False | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a URL that describes the organisation.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Description | ++ | False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Organisation contact point(s)
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Contact Point | ++ | False | +True | +["EmailAddress[{'anyOf': [{'format': 'email', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.EmailAddress.EmailAddress]]', 'null'] | +
Please indicate if the organisation is an Alliance Member or a Hub.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Membership | ++ | False | +False | +["MemberOf['HUB','ALLIANCE','OTHER','NCS']", 'null'] | +
Please provide a valid email address that can be used to coordinate data access requests with the publisher. Organisations are expected to provide a dedicated email address associated with the data access request process. Notes- An employee's email address can only be provided on a temporary basis and if one is provided an explicit consent must be obtained for this purpose. Gateway Feature: If no contact point is provided in this field, this field will be defaulted to the teams support email provided in the teams setting.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Contact Point | ++ | False | +True | +["EmailAddress[{'anyOf': [{'format': 'email', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide a list of relevant and specific keywords that can improve the SEO of your dataset as a comma separated list. Notes: Onboarding portal will suggest keywords based on title, abstract and description. We are compiling a standardised list of keywords and synonyms across datasets to make filtering easier for users.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Keywords | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.OneHundredFiftyCharacters.OneHundredFiftyCharacters]', 'null'] | +
Examples:
+Alternate dataset identifiers or local identifiers
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Alternate dataset identifiers | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.ShortDescription.ShortDescription]]', 'null'] | +
DOI associated to this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| DOI Name | ++ | False | +False | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Documentation can include a rich text description of the dataset or links to media such as documents, images, presentations, videos or links to data dictionaries, profiles or dashboards. Organisations are required to confirm that they have permission to distribute any additional media.
+A free-text description of the dataset. Gateway Feature: Keywords and text may be extracted out of the description and index for search
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Description | ++ | False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide any media associated with the Gateway Organisation using a valid URI for the content. This is an opportunity to provide additional context that could be useful for researchers wanting to understand more about the dataset and its relevance to their research question. The following formats will be accepted .jpg, .png or .svg, .pdf, .xslx or .docx. Note: media asset can be hosted by the organisation or uploaded using the onboarding portal.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Associated Media | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Examples:
+Please complete only if the dataset is part of a group or family
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Group | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Union[hdr_schemata.definitions.HDRUK.Url.Url, NoneType, hdr_schemata.definitions.HDRUK.OneHundredFiftyCharacters.OneHundredFiftyCharacters, hdr_schemata.definitions.HDRUK.IsPartOfEnum.IsPartOfEnum]]', 'null'] | +
Examples:
+This information includes attributes for geographical and temporal coverage, cohort details etc. to enable a deeper understanding of the dataset content so that researchers can make decisions about the relevance of the underlying data.
+The geographical area covered by the dataset. It is recommended that links are to entries in a well-maintained gazetteer such as https://www.geonames.org/ or https://what3words.com/daring.lion.race.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Geographic Coverage | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Examples:
+Please indicate the age range in whole years of participants in the dataset. Please provide range in the following format '[min age] – [max age]' where both the minimum and maximum are whole numbers (integers).
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Age Range | ++ | False | +False | +["AgeRange[{'anyOf': [{'pattern': 'Not Known | +
Examples:
+Availability of physical samples associated with the dataset. If samples are available, please indicate the types of samples that are available. More than one type may be provided. If sample are not yet available, please provide “AVAILABILITY TO BE CONFIRMED”. If samples are not available, then please provide “NOT AVAILABLE”.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Physical Sample Availability | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List', 'null'] | +
Examples:
+If known, what is the typical time span that a patient appears in the dataset (follow up period)
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Followup | ++ | False | +False | +["Followup['0 - 6 MONTHS','6 - 12 MONTHS','1 - 10 YEARS','> 10 YEARS','UNKNOWN','CONTINUOUS','OTHER',null]", 'null'] | +
Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Pathway | ++ | False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Provenance information allows researchers to understand data within the context of its origins and can be an indicator of quality, authenticity and timeliness.
+Coverate by origin (geographical and situations)
+Please indicate the purpose(s) that the dataset was collected.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Purpose | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Purpose.Purpose]', 'null'] | +
Please indicate the source of the data extraction
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Source | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Source.Source]', 'null'] | +
Please indicate the setting(s) where data was collected. Multiple settings may be provided
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection Situation Setting | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Setting.Setting]', 'null'] | +
Dates and other temporal coverage information
+Date of the latest release of the dataset. If this is a regular release i.e. quarterly, or this is a static dataset please complete this alongside Periodicity. If this is Irregular or Continuously released please leave this blank. Notes: Periodicity and release date will be used to determine when the next release is expected. E.g. if the release date is documented as 01/01/2020 and it is now 20/04/2020 and there is a quarterly release schedule, the latest release will be calculated as 01/04/2020.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Release Date | ++ | False | +False | +['date', 'datetime', 'null'] | +
The start of the time period that the dataset provides coverage for. If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Start Date | ++ | False | +True | +['date', 'datetime', 'null'] | +
The end of the time period that the dataset provides coverage for. If the dataset is “Continuous” and has no known end date, please state continuous. If there are multiple cohorts in the dataset with varying end dates, please provide the latest date and use the description or the media attribute to provide more information.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| End Date | ++ | False | +False | +['date', 'datetime', "EndDateEnum['CONTINUOUS',null]", 'null'] | +
Please indicate the typical time-lag between an event and the data for that event appearing in the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Time Lag | ++ | False | +True | +["TimeLag['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NO TIMELAG','NOT APPLICABLE','OTHER',null]"] | +
Please indicate the frequency of distribution release. If a dataset is distributed regularly please choose a distribution release periodicity from the constrained list and indicate the next release date. When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. If a dataset has been published and will remain static please indicate that it is static and indicated when it was released. If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Publishing Frequency | ++ | False | +True | +["Periodicity['STATIC','IRREGULAR','CONTINUOUS','BIENNIAL','ANNUAL','BIANNUAL','QUARTERLY','BIMONTHLY','MONTHLY','BIWEEKLY','WEEKLY','SEMIWEEKLY','DAILY','OTHER',null]"] | +
Accessibility information allows researchers to understand access, usage, limitations, formats, standards and linkage or interoperability with toolsets.
+This section includes information about how the data can be used and how it is currently being used
+Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. NOTE: we have extended the DUO to include a value for NO LINKAGE
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Use Limitation | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.DataUseLimitation.DataUseLimitation]', 'null'] | +
Please indicate fit here are any additional conditions set for use if any, multiple requirements may be provided. Please ensure that these restrictions are documented in access rights information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Use Requirements | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.DataUseRequirements.DataUseRequirements]', 'null'] | +
Please provide the text that you would like included as part of any citation that credits this dataset. This is typically just the name of the publisher. No employee details should be provided.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Citation Requirements' | ++ | False | +False | +["ShortDescription[{'anyOf': [{'maxLength': 1000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.ShortDescription.ShortDescription]]', 'null'] | +
None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Investigations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Please provide the keystone paper associated with the dataset. Also include a list of known citations, if available and should be links to existing resources where the dataset has been used or referenced. Please provide multiple entries, or if you are using a csv upload please provide them as a tab separated list.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Citations | ++ | False | +False | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'str', 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Doi.Doi]]', 'null'] | +
This section includes information about data access
+Please provide details for the data access rights
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Rights | ++ | False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a brief description of the data access services that are available including: environment that is currently available to researchers;additional consultancy and services;any indication of costs associated. If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Service | ++ | False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide link(s) to a webpage detailing the commercial model for processing data access requests for the organisation (if available) Definition: Indication of commercial model or cost (in GBP) for processing each data access request by the data custodian.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Access Request Cost | ++ | False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Please provide an indication of the typical processing times based on the types of requests typically received.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Request Duration | ++ | False | +False | +["DeliveryLeadTime['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NOT APPLICABLE','OTHER',null]", 'null'] | +
Please use country code from ISO 3166-1 country codes and the associated ISO 3166-2 for regions, cities, states etc. for the country/state under whose laws the data subjects' data is collected, processed and stored.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Jurisdiction | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Isocountrycode.Isocountrycode]', 'null'] | +
Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Controller | ++ | False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Processor | ++ | False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Section includes technical attributes for language vocabularies, sizes etc. and gives researchers facts about and processing the underlying data in the dataset.
+List any relevant terminologies / ontologies / controlled vocabularies, such as ICD 10 Codes, NHS Data Dictionary National Codes or SNOMED CT International, that are being used by the dataset. If the controlled vocabularies are local standards, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition. Notes: More than one vocabulary may be provided.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Controlled Vocabulary | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.ControlledVocabulary.ControlledVocabulary]', 'null'] | +
List standardised data models that the dataset has been stored in or transformed to, such as OMOP or FHIR. If the data is only available in a local format, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Conforms To | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.StandardisedDataModels.StandardisedDataModels]', 'null'] | +
Examples:
+This should list all the languages in which the dataset metadata and underlying data is made available.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Language | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Language.Language]', 'null'] | +
If multiple formats are available please specify. See application, audio, image, message, model, multipart, text, video, https://www.iana.org/assignments/media-types/media-types.xhtml Note: If your file format is not included in the current list of formats, please indicate other. If you are using the HOP you will be directed to a service desk page where you can request your additional format. If not please go to: https://metadata.atlassian.net/servicedesk/customer/portal/4 to request your format.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Format | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Format.Format]', 'null'] | +
This section includes information about related datasets that may have previously been linked, as well as indicating if there is the opportunity to link to other datasets in the future. If a dataset has been enriched and/or derivations, scores and existing tools are available this section allows providers to indicate this to researchers.
+If applicable, please provide the DOI of other datasets that have previously been linked to this dataset and their availability. If no DOI is available, please provide the title of the datasets that can be linked, where possible using the same title of a dataset previously onboarded to the HOP. Note: If all the datasets from Gateway organisation can be linked please indicate “ALL” and the onboarding portal will automate linkage across the datasets submitted.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Linked Datasets | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Union[hdr_schemata.definitions.HDRUK.Url.Url, NoneType, hdr_schemata.definitions.HDRUK.OneHundredFiftyCharacters.OneHundredFiftyCharacters]]', 'null'] | +
Indicate if derived datasets or predefined extracts are available and the type of derivation available. Notes. Single or multiple dimensions can be provided as a derived extract alongside the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Derivations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.AbstractText.AbstractText]]', 'null'] | +
Please provide the URL of any analysis tools or models that have been created for this dataset and are available for further use. Multiple tools may be provided. Note: We encourage users to adopt a model along the lines of https://www.ga4gh.org/news/tool-registry-service-api-enabling-an-interoperable-library-of-genomics-analysis-tools/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Tools | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Multiple observations about the dataset may be provided and users are expected to provide at least one observation
(1..*). We will be supporting the schema.org observation model (https://schema.org/Observation) with default values. Users will be encouraged to provide their own statistical populations as the project progresses.
Example:
<b> Statistical Population 1
</b> type: StatisticalPopulation populationType: Persons numConstraints: 0
<b> Statistical Population 2 </b> type: StatisticalPopulation populationType: Events numConstraints: 0 <b> Statistical Population 3 </b> type: StatisticalPopulation populationType: Findings numConstraints: 0 typeOf: Observation observedNode: <b> Statistical Population 1 </b> measuredProperty: count measuredValue: 32937 observationDate: “2017”"
Please select one of the following statistical populations for you observation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Statistical Population | ++ | False | +True | +["StatisticalPopulationConstrained['PERSONS','EVENTS','FINDINGS']"] | +
Examples:
+Please provide the population size associated with the population type the dataset i.e. 1000 people in a study, or 87 images (MRI) of Knee Usage Note: Used with Statistical Population, which specifies the type of the population in the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured Value | ++ | False | +True | +['int'] | +
If SNOMED CT term does not provide sufficient detail, please provide a description that disambiguates the population type.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Disambiguating Description | ++ | False | +False | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide the date that the observation was made. Some datasets may be continuously updated and the number of records will change regularly, so the observation date provides users with the date that the analysis or query was run to generate the particular observation. Multiple observations can be made i.e. an observation of cumulative COVID positive cases by specimen on the 1/1/2021 could be 2M. On the 8/1/2021 a new observation could be 2.1M. Users can add multiple observations.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Observation Date | ++ | False | +True | +['date', 'datetime'] | +
Initially this will be defaulted to "COUNT"
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured Property | ++ | False | +True | +['MeasuredProperty[{}]'] | +
Structural metadata about tables, columns and values
+The name of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Name | ++ | False | +True | +['str', 'null'] | +
The name of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Name | ++ | False | +False | +['str', 'null'] | +
The name of a table in a dataset.
+The name of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Name | ++ | False | +True | +['Name[{}]'] | +
The data type of values in the column
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Type | ++ | False | +True | +['str'] | +
A description of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Description | ++ | False | +False | +['str', 'null'] | +
A True or False value, indicating if the field is sensitive or not
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sensitive | ++ | False | +True | +['bool'] | +
summary.populationSize: new integer field to record the population size of the dataset/cohort in the summary fieldsummary.datasetType: new string field to be used to record the type of dataset (will be changed to enum at some later point )summary.datasetSubType: new string field to be used with summary.datasetType to record the type of datasetcoverage.physicalSampleAvailability --> coverage.biologicalsamples:coverage.gender, list:coverage.psychological, list:coverage.physical, list:coverage.anthropometric, list:coverage.lifestyle, list:coverage.socioeconomic, list:tissuesSampleCollection.dataCategoriestissuesSampleCollection.materialTypetissuesSampleCollection.collectionTypetissuesSampleCollection.tissueSampleMetadata.creationDatetissuesSampleCollection.tissueSampleMetadata.anatomicalSiteOntologyCode:^[C\d]{3}\.\d{4}\/\d{1,4}$System dataset identifier
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset identifier | ++ | False | +True | +["Uuidv4[{'maxLength': 36, 'minLength': 36, 'pattern': '^[a-fA-F0-9]{8}-[a-fA-F0-9]{4}-[a-fA-F0-9]{4}-[a-fA-F0-9]{4}-[a-fA-F0-9]{12}$', 'type': 'string'}]", "Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Dataset metadata version
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Version | ++ | False | +True | +["Semver[{'pattern': '^([0-9]+)\\.([0-9]+)\\.([0-9]+)$', 'type': 'string'}]"] | +
Examples:
+A list of persistent identifiers and version numbers for previous versions of metadata for this dataset
+Version number used for previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision version | ++ | False | +True | +["Semver[{'pattern': '^([0-9]+)\\.([0-9]+)\\.([0-9]+)$', 'type': 'string'}]"] | +
Examples:
+Some url with a reference to the record of a previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision url | ++ | False | +True | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Datetime stamp of when this metadata version was initially issued
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Metadata Issued Datetime | ++ | False | +True | +['datetime'] | +
Datetime stamp of when this metadata was last modified
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Last Modified Datetime | ++ | False | +True | +['datetime'] | +
Summary metadata must be completed by Data Custodians onboarding metadata into the Innovation Gateway MVP.
+Title of the dataset limited to 150 characters. It should provide a short description of the dataset and be unique across the gateway. If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. Please avoid acronyms wherever possible. Good titles should summarise the content of the dataset and if relevant, the region the dataset covers.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Title | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"] | +
Examples:
+Provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. The optimal length is one paragraph (limited to 255 characters) and effective abstracts should avoid long sentences and abbreviations where possible
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Abstract | ++ | False | +True | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+This is the organisation responsible for running or supporting the data access request process, as well as publishing and maintaining the metadata. In most this will be the same as the HDR UK Organisation (Hub or Alliance Member). However, in some cases this will be different i.e. Tissue Directory are an HDR UK Gateway organisation but coordinate activities across a number of data publishers i.e. Cambridge Blood and Stem Cell Biobank.
+Please provide a Grid.ac identifier (see https://www.grid.ac/institutes) for your organisation. If your organisation does not have a Grid.ac identifier please use the “suggest and institute” function here: https://www.grid.ac/institutes#
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Identifier | ++ | False | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Name of the organisation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Name | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"] | +
Please provide a logo associated with the Gateway Organisation using a valid URL. The following formats will be accepted .jpg, .png or .svg.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Logo | ++ | False | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a URL that describes the organisation.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Description | ++ | False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Organisation contact point(s)
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Contact Point | ++ | False | +True | +["EmailAddress[{'anyOf': [{'format': 'email', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.EmailAddress.EmailAddress]]', 'null'] | +
Please indicate if the organisation is an Alliance Member or a Hub.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Membership | ++ | False | +False | +["MemberOf['HUB','ALLIANCE','OTHER','NCS']", 'null'] | +
Please provide a valid email address that can be used to coordinate data access requests with the publisher. Organisations are expected to provide a dedicated email address associated with the data access request process. Notes- An employee's email address can only be provided on a temporary basis and if one is provided an explicit consent must be obtained for this purpose. Gateway Feature: If no contact point is provided in this field, this field will be defaulted to the teams support email provided in the teams setting.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Contact Point | ++ | False | +True | +["EmailAddress[{'anyOf': [{'format': 'email', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide a list of relevant and specific keywords that can improve the SEO of your dataset as a comma separated list. Notes: Onboarding portal will suggest keywords based on title, abstract and description. We are compiling a standardised list of keywords and synonyms across datasets to make filtering easier for users.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Keywords | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.OneHundredFiftyCharacters.OneHundredFiftyCharacters]', 'null'] | +
Examples:
+Alternate dataset identifiers or local identifiers
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Alternate dataset identifiers | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.ShortDescription.ShortDescription]]', 'null'] | +
DOI associated to this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| DOI Name | ++ | False | +False | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Placeholder for dataset type"
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Type | ++ | False | +True | +["DatasetType[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Placeholder for dataset sub-type
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Sub-type | ++ | False | +True | +["DatasetType[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Summary population size of the cohort
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Population size | ++ | False | +True | +['int', 'null'] | +
Documentation can include a rich text description of the dataset or links to media such as documents, images, presentations, videos or links to data dictionaries, profiles or dashboards. Organisations are required to confirm that they have permission to distribute any additional media.
+A free-text description of the dataset. Gateway Feature: Keywords and text may be extracted out of the description and index for search
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Description | ++ | False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide any media associated with the Gateway Organisation using a valid URI for the content. This is an opportunity to provide additional context that could be useful for researchers wanting to understand more about the dataset and its relevance to their research question. The following formats will be accepted .jpg, .png or .svg, .pdf, .xslx or .docx. Note: media asset can be hosted by the organisation or uploaded using the onboarding portal.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Associated Media | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Examples:
+Please complete only if the dataset is part of a group or family
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Group | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Union[hdr_schemata.definitions.HDRUK.Url.Url, NoneType, hdr_schemata.definitions.HDRUK.OneHundredFiftyCharacters.OneHundredFiftyCharacters, hdr_schemata.definitions.HDRUK.IsPartOfEnum.IsPartOfEnum]]', 'null'] | +
Examples:
+Observational, Spatial and Temporal coverage
+The geographical area covered by the dataset. It is recommended that links are to entries in a well-maintained gazetteer such as https://www.geonames.org/ or https://what3words.com/daring.lion.race.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Geographic Coverage | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Examples:
+Please indicate the age range in whole years of participants in the dataset. Please provide range in the following format '[min age] – [max age]' where both the minimum and maximum are whole numbers (integers).
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Age Range | ++ | False | +False | +["AgeRange[{'anyOf': [{'pattern': 'Not Known | +
Examples:
+If known, what is the typical time span that a patient appears in the dataset (follow up period)
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Followup | ++ | False | +False | +["Followup['0 - 6 MONTHS','6 - 12 MONTHS','1 - 10 YEARS','> 10 YEARS','UNKNOWN','CONTINUOUS','OTHER',null]", 'null'] | +
Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Pathway | ++ | False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Male, Female, Other
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Gender | ++ | True | +False | +["GenderType['Male','Female','Other']"] | +
Blood, Saliva, Urine, Other
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Biological Samples | ++ | True | +False | +["BiologicalSampleType['Blood','Other','Urine','Saliva']"] | +
Mental health, Cognitive function
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Psychological | ++ | True | +False | +["PsychologicalType['Cognitive Function','Mental Health']"] | +
Cardiovascular, Respiratory, Musculoskeletal, Hearing and Vision, Reproductive
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Physical | ++ | True | +False | +["PhysicalType['Respiratory','Vision','Hearing','Musculoskeletal','Cardiovascular','Reproductive']"] | +
Height, Weight, Waist circumference, Hip circumference, Blood pressure
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anthropometric | ++ | True | +False | +["AnthropometricType['Blood Pressure','Hip Circumference','Height','Waist Circumference','Weight']"] | +
Cohort lifestyle habits: Smoking, Physical activity, Dietary habits, Alcohol
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Lifestyle | ++ | True | +False | +["LifestylesType['Smoking','Dietary Habits','Physical Activity','Alcohol']"] | +
Occupation, Family circumstances, Housing, Education, Ethnic group, Martial status, Social support
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Socio-economic | ++ | True | +False | +["SocioEconomicType['Finances','Family Circumstances','Housing','Education','Marital Status','Occupation','Ethnic Group','Social Support']"] | +
Provenance information allows researchers to understand data within the context of its origins and can be an indicator of quality, authenticity and timeliness.
+Coverate by origin (geographical and situations)
+Please indicate the purpose(s) that the dataset was collected.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Purpose | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Purpose.Purpose]', 'null'] | +
Please indicate the source of the data extraction
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Source | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Source.Source]', 'null'] | +
Please indicate the setting(s) where data was collected. Multiple settings may be provided
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection Situation Setting | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Setting.Setting]', 'null'] | +
Dates and other temporal coverage information
+Date of the latest release of the dataset. If this is a regular release i.e. quarterly, or this is a static dataset please complete this alongside Periodicity. If this is Irregular or Continuously released please leave this blank. Notes: Periodicity and release date will be used to determine when the next release is expected. E.g. if the release date is documented as 01/01/2020 and it is now 20/04/2020 and there is a quarterly release schedule, the latest release will be calculated as 01/04/2020.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Release Date | ++ | False | +False | +['date', 'datetime', 'null'] | +
The start of the time period that the dataset provides coverage for. If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Start Date | ++ | False | +True | +['date', 'datetime', 'null'] | +
The end of the time period that the dataset provides coverage for. If the dataset is “Continuous” and has no known end date, please state continuous. If there are multiple cohorts in the dataset with varying end dates, please provide the latest date and use the description or the media attribute to provide more information.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| End Date | ++ | False | +False | +['date', 'datetime', "EndDateEnum['CONTINUOUS',null]", 'null'] | +
Please indicate the typical time-lag between an event and the data for that event appearing in the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Time Lag | ++ | False | +True | +["TimeLag['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NO TIMELAG','NOT APPLICABLE','OTHER',null]"] | +
Please indicate the frequency of distribution release. If a dataset is distributed regularly please choose a distribution release periodicity from the constrained list and indicate the next release date. When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. If a dataset has been published and will remain static please indicate that it is static and indicated when it was released. If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Publishing Frequency | ++ | False | +True | +["Periodicity['STATIC','IRREGULAR','CONTINUOUS','BIENNIAL','ANNUAL','BIANNUAL','QUARTERLY','BIMONTHLY','MONTHLY','BIWEEKLY','WEEKLY','SEMIWEEKLY','DAILY','OTHER',null]"] | +
Accessibility information allows researchers to understand access, usage, limitations, formats, standards and linkage or interoperability with toolsets.
+This section includes information about how the data can be used and how it is currently being used
+Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. NOTE: we have extended the DUO to include a value for NO LINKAGE
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Use Limitation | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.DataUseLimitation.DataUseLimitation]', 'null'] | +
Please indicate fit here are any additional conditions set for use if any, multiple requirements may be provided. Please ensure that these restrictions are documented in access rights information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Use Requirements | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.DataUseRequirements.DataUseRequirements]', 'null'] | +
Please provide the text that you would like included as part of any citation that credits this dataset. This is typically just the name of the publisher. No employee details should be provided.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Citation Requirements' | ++ | False | +False | +["ShortDescription[{'anyOf': [{'maxLength': 1000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.ShortDescription.ShortDescription]]', 'null'] | +
None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Investigations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Please provide the keystone paper associated with the dataset. Also include a list of known citations, if available and should be links to existing resources where the dataset has been used or referenced. Please provide multiple entries, or if you are using a csv upload please provide them as a tab separated list.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Citations | ++ | False | +False | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'str', 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Doi.Doi]]', 'null'] | +
This section includes information about data access
+Please provide details for the data access rights
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Rights | ++ | False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a brief description of the data access services that are available including: environment that is currently available to researchers;additional consultancy and services;any indication of costs associated. If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Service | ++ | False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide link(s) to a webpage detailing the commercial model for processing data access requests for the organisation (if available) Definition: Indication of commercial model or cost (in GBP) for processing each data access request by the data custodian.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Access Request Cost | ++ | False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Please provide an indication of the typical processing times based on the types of requests typically received.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Request Duration | ++ | False | +False | +["DeliveryLeadTime['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NOT APPLICABLE','OTHER',null]", 'null'] | +
Please use country code from ISO 3166-1 country codes and the associated ISO 3166-2 for regions, cities, states etc. for the country/state under whose laws the data subjects' data is collected, processed and stored.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Jurisdiction | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Isocountrycode.Isocountrycode]', 'null'] | +
Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Controller | ++ | False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Processor | ++ | False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Section includes technical attributes for language vocabularies, sizes etc. and gives researchers facts about and processing the underlying data in the dataset.
+List any relevant terminologies / ontologies / controlled vocabularies, such as ICD 10 Codes, NHS Data Dictionary National Codes or SNOMED CT International, that are being used by the dataset. If the controlled vocabularies are local standards, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition. Notes: More than one vocabulary may be provided.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Controlled Vocabulary | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.ControlledVocabulary.ControlledVocabulary]', 'null'] | +
List standardised data models that the dataset has been stored in or transformed to, such as OMOP or FHIR. If the data is only available in a local format, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Conforms To | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.StandardisedDataModels.StandardisedDataModels]', 'null'] | +
Examples:
+This should list all the languages in which the dataset metadata and underlying data is made available.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Language | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Language.Language]', 'null'] | +
If multiple formats are available please specify. See application, audio, image, message, model, multipart, text, video, https://www.iana.org/assignments/media-types/media-types.xhtml Note: If your file format is not included in the current list of formats, please indicate other. If you are using the HOP you will be directed to a service desk page where you can request your additional format. If not please go to: https://metadata.atlassian.net/servicedesk/customer/portal/4 to request your format.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Format | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Format.Format]', 'null'] | +
This section includes information about related datasets that may have previously been linked, as well as indicating if there is the opportunity to link to other datasets in the future. If a dataset has been enriched and/or derivations, scores and existing tools are available this section allows providers to indicate this to researchers.
+If applicable, please provide the DOI of other datasets that have previously been linked to this dataset and their availability. If no DOI is available, please provide the title of the datasets that can be linked, where possible using the same title of a dataset previously onboarded to the HOP. Note: If all the datasets from Gateway organisation can be linked please indicate “ALL” and the onboarding portal will automate linkage across the datasets submitted.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Linked Datasets | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Union[hdr_schemata.definitions.HDRUK.Url.Url, NoneType, hdr_schemata.definitions.HDRUK.OneHundredFiftyCharacters.OneHundredFiftyCharacters]]', 'null'] | +
Indicate if derived datasets or predefined extracts are available and the type of derivation available. Notes. Single or multiple dimensions can be provided as a derived extract alongside the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Derivations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.AbstractText.AbstractText]]', 'null'] | +
Please provide the URL of any analysis tools or models that have been created for this dataset and are available for further use. Multiple tools may be provided. Note: We encourage users to adopt a model along the lines of https://www.ga4gh.org/news/tool-registry-service-api-enabling-an-interoperable-library-of-genomics-analysis-tools/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Tools | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Multiple observations about the dataset may be provided and users are expected to provide at least one observation
(1..*). We will be supporting the schema.org observation model (https://schema.org/Observation) with default values. Users will be encouraged to provide their own statistical populations as the project progresses.
Example:
<b> Statistical Population 1
</b> type: StatisticalPopulation populationType: Persons numConstraints: 0
<b> Statistical Population 2 </b> type: StatisticalPopulation populationType: Events numConstraints: 0 <b> Statistical Population 3 </b> type: StatisticalPopulation populationType: Findings numConstraints: 0 typeOf: Observation observedNode: <b> Statistical Population 1 </b> measuredProperty: count measuredValue: 32937 observationDate: “2017”"
Please select one of the following statistical populations for you observation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Statistical Population | ++ | False | +True | +["StatisticalPopulationConstrained['PERSONS','EVENTS','FINDINGS']"] | +
Examples:
+Please provide the population size associated with the population type the dataset i.e. 1000 people in a study, or 87 images (MRI) of Knee Usage Note: Used with Statistical Population, which specifies the type of the population in the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured Value | ++ | False | +True | +['int'] | +
If SNOMED CT term does not provide sufficient detail, please provide a description that disambiguates the population type.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Disambiguating Description | ++ | False | +False | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide the date that the observation was made. Some datasets may be continuously updated and the number of records will change regularly, so the observation date provides users with the date that the analysis or query was run to generate the particular observation. Multiple observations can be made i.e. an observation of cumulative COVID positive cases by specimen on the 1/1/2021 could be 2M. On the 8/1/2021 a new observation could be 2.1M. Users can add multiple observations.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Observation Date | ++ | False | +True | +['date', 'datetime'] | +
Initially this will be defaulted to "COUNT"
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured Property | ++ | False | +True | +['MeasuredProperty[{}]'] | +
Structural metadata about tables, columns and values
+The name of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Name | ++ | False | +True | +['str', 'null'] | +
The name of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Name | ++ | False | +False | +['str', 'null'] | +
The name of a table in a dataset.
+The name of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Name | ++ | False | +True | +['Name[{}]'] | +
The data type of values in the column
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Type | ++ | False | +True | +['str'] | +
A description of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Description | ++ | False | +False | +['str', 'null'] | +
A True or False value, indicating if the field is sensitive or not
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sensitive | ++ | False | +True | +['bool'] | +
Metadata collection for Tissue Samples datasets
+The type of data that is associated with the samples in the study. Can be several values MIABIS-2.0-13
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Categories | ++ | True | +False | +["TissueDataCategoriesEnum['Biological samples','Survey data','Imaging data','Medical records','National registries','Genealogical records','Physiological/Biochemical measurements','Other']"] | +
The biospecimen saved from a biological entity for propagation e.g. testing, diagnostics, treatment or research purposes. Can be several values MIABIS-2.0-14
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Material Type | ++ | True | +False | +["MaterialTypeCategories['Blood','DNA','Faeces','Immortalized Cell Lines','Isolated Pathogen','Other','Plasma','RNA','Saliva','Serum','Tissue (Frozen)','Tissue (FFPE)','Urine']"] | +
Metadata related to the tissue sample
+Date when the tissue sample metadata was created
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Creation Date | ++ | False | +False | +['date', 'datetime', 'null'] | +
Ontology code for the anatomical site, this code must match an ICD-0-3 format
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anatomical Site Ontology Code | ++ | False | +False | +["ICD_0_3[{'anyOf': [{'pattern': '^[C\\d]{3}\\.\\d{4}\\/\\d{1,4}$', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The type of the sample collection. Can be several values MIABIS-2.0-16
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection Type | ++ | False | +False | +["TissueCollectionTypeEnum['Case-control','Cohort','Cross-sectional','Longitudinal','Twin-study','Quality control','Population-based','Disease specific','Birth cohort','Other']", 'null'] | +
enrichmentAndLinkage.syntheticDataWebLink: new field for storing internal/external links to synthetic data resources related to the datasetaccessibility.access.accessServiceCategory: new field for categorising if a dataset access is direct, TRE/SDE, etc.System dataset identifier
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset identifier | ++ | False | +True | +["Uuidv4[{'maxLength': 36, 'minLength': 36, 'pattern': '^[a-fA-F0-9]{8}-[a-fA-F0-9]{4}-[a-fA-F0-9]{4}-[a-fA-F0-9]{4}-[a-fA-F0-9]{12}$', 'type': 'string'}]", "Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Dataset metadata version
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Version | ++ | False | +True | +["Semver[{'pattern': '^([0-9]+)\\.([0-9]+)\\.([0-9]+)$', 'type': 'string'}]"] | +
Examples:
+A list of persistent identifiers and version numbers for previous versions of metadata for this dataset
+Version number used for previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision version | ++ | False | +True | +["Semver[{'pattern': '^([0-9]+)\\.([0-9]+)\\.([0-9]+)$', 'type': 'string'}]"] | +
Examples:
+Some url with a reference to the record of a previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision url | ++ | False | +True | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Datetime stamp of when this metadata version was initially issued
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Metadata Issued Datetime | ++ | False | +True | +['datetime'] | +
Datetime stamp of when this metadata was last modified
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Last Modified Datetime | ++ | False | +True | +['datetime'] | +
Summary metadata must be completed by Data Custodians onboarding metadata into the Innovation Gateway MVP.
+Title of the dataset limited to 150 characters. It should provide a short description of the dataset and be unique across the gateway. If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. Please avoid acronyms wherever possible. Good titles should summarise the content of the dataset and if relevant, the region the dataset covers.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Title | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"] | +
Examples:
+Provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. The optimal length is one paragraph (limited to 255 characters) and effective abstracts should avoid long sentences and abbreviations where possible
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Abstract | ++ | False | +True | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+This is the organisation responsible for running or supporting the data access request process, as well as publishing and maintaining the metadata. In most this will be the same as the HDR UK Organisation (Hub or Alliance Member). However, in some cases this will be different i.e. Tissue Directory are an HDR UK Gateway organisation but coordinate activities across a number of data publishers i.e. Cambridge Blood and Stem Cell Biobank.
+Please provide a Grid.ac identifier (see https://www.grid.ac/institutes) for your organisation. If your organisation does not have a Grid.ac identifier please use the “suggest and institute” function here: https://www.grid.ac/institutes#
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Identifier | ++ | False | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Name of the organisation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Name | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"] | +
Please provide a logo associated with the Gateway Organisation using a valid URL. The following formats will be accepted .jpg, .png or .svg.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Logo | ++ | False | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a URL that describes the organisation.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Description | ++ | False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Organisation contact point(s)
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Contact Point | ++ | False | +True | +["EmailAddress[{'anyOf': [{'format': 'email', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.EmailAddress.EmailAddress]]', 'null'] | +
Please indicate if the organisation is an Alliance Member or a Hub.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Membership | ++ | False | +False | +["MemberOf['HUB','ALLIANCE','OTHER','NCS']", 'null'] | +
Please provide a valid email address that can be used to coordinate data access requests with the publisher. Organisations are expected to provide a dedicated email address associated with the data access request process. Notes- An employee's email address can only be provided on a temporary basis and if one is provided an explicit consent must be obtained for this purpose. Gateway Feature: If no contact point is provided in this field, this field will be defaulted to the teams support email provided in the teams setting.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Contact Point | ++ | False | +True | +["EmailAddress[{'anyOf': [{'format': 'email', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide a list of relevant and specific keywords that can improve the SEO of your dataset as a comma separated list. Notes: Onboarding portal will suggest keywords based on title, abstract and description. We are compiling a standardised list of keywords and synonyms across datasets to make filtering easier for users.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Keywords | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.OneHundredFiftyCharacters.OneHundredFiftyCharacters]', 'null'] | +
Examples:
+Alternate dataset identifiers or local identifiers
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Alternate dataset identifiers | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.ShortDescription.ShortDescription]]', 'null'] | +
DOI associated to this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| DOI Name | ++ | False | +False | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Placeholder for dataset type"
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Type | ++ | False | +True | +["DatasetType[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Placeholder for dataset sub-type
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Sub-type | ++ | False | +True | +["DatasetType[{'anyOf': [{'maxLength': 100, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Summary population size of the cohort
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Population size | ++ | False | +True | +['int', 'null'] | +
Documentation can include a rich text description of the dataset or links to media such as documents, images, presentations, videos or links to data dictionaries, profiles or dashboards. Organisations are required to confirm that they have permission to distribute any additional media.
+A free-text description of the dataset. Gateway Feature: Keywords and text may be extracted out of the description and index for search
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Description | ++ | False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide any media associated with the Gateway Organisation using a valid URI for the content. This is an opportunity to provide additional context that could be useful for researchers wanting to understand more about the dataset and its relevance to their research question. The following formats will be accepted .jpg, .png or .svg, .pdf, .xslx or .docx. Note: media asset can be hosted by the organisation or uploaded using the onboarding portal.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Associated Media | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Examples:
+Please complete only if the dataset is part of a group or family
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Group | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Union[hdr_schemata.definitions.HDRUK.Url.Url, NoneType, hdr_schemata.definitions.HDRUK.OneHundredFiftyCharacters.OneHundredFiftyCharacters, hdr_schemata.definitions.HDRUK.IsPartOfEnum.IsPartOfEnum]]', 'null'] | +
Examples:
+Observational, Spatial and Temporal coverage
+The geographical area covered by the dataset. It is recommended that links are to entries in a well-maintained gazetteer such as https://www.geonames.org/ or https://what3words.com/daring.lion.race.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Geographic Coverage | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Examples:
+Please indicate the age range in whole years of participants in the dataset. Please provide range in the following format '[min age] – [max age]' where both the minimum and maximum are whole numbers (integers).
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Age Range | ++ | False | +False | +["AgeRange[{'anyOf': [{'pattern': 'Not Known | +
Examples:
+If known, what is the typical time span that a patient appears in the dataset (follow up period)
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Followup | ++ | False | +False | +["Followup['0 - 6 MONTHS','6 - 12 MONTHS','1 - 10 YEARS','> 10 YEARS','UNKNOWN','CONTINUOUS','OTHER',null]", 'null'] | +
Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Pathway | ++ | False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Male, Female, Other
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Gender | ++ | True | +False | +["GenderType['Male','Female','Other']"] | +
Blood, Saliva, Urine, Other
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Biological Samples | ++ | True | +False | +["BiologicalSampleType['Blood','Other','Urine','Saliva']"] | +
Mental health, Cognitive function
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Psychological | ++ | True | +False | +["PsychologicalType['Cognitive Function','Mental Health']"] | +
Cardiovascular, Respiratory, Musculoskeletal, Hearing and Vision, Reproductive
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Physical | ++ | True | +False | +["PhysicalType['Respiratory','Vision','Hearing','Musculoskeletal','Cardiovascular','Reproductive']"] | +
Height, Weight, Waist circumference, Hip circumference, Blood pressure
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anthropometric | ++ | True | +False | +["AnthropometricType['Blood Pressure','Hip Circumference','Height','Waist Circumference','Weight']"] | +
Cohort lifestyle habits: Smoking, Physical activity, Dietary habits, Alcohol
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Lifestyle | ++ | True | +False | +["LifestylesType['Smoking','Dietary Habits','Physical Activity','Alcohol']"] | +
Occupation, Family circumstances, Housing, Education, Ethnic group, Martial status, Social support
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Socio-economic | ++ | True | +False | +["SocioEconomicType['Finances','Family Circumstances','Housing','Education','Marital Status','Occupation','Ethnic Group','Social Support']"] | +
Provenance information allows researchers to understand data within the context of its origins and can be an indicator of quality, authenticity and timeliness.
+Coverate by origin (geographical and situations)
+Please indicate the purpose(s) that the dataset was collected.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Purpose | ++ | True | +False | +["Purpose['STUDY','DISEASE REGISTRY','TRIAL','CARE','AUDIT','ADMINISTRATIVE','FINANCIAL','STATUTORY','OTHER',null]"] | +
Please indicate the source of the data extraction
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Source | ++ | True | +False | +["Source['EPR','ELECTRONIC SURVEY','LIMS','OTHER INFORMATION SYSTEM','PAPER BASED','FREETEXT NLP','MACHINE GENERATED','OTHER']"] | +
Please indicate the setting(s) where data was collected. Multiple settings may be provided
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection Situation Setting | ++ | True | +False | +["Setting['CLINIC','PRIMARY CARE','ACCIDENT AND EMERGENCY','OUTPATIENTS','IN-PATIENTS','SERVICES','COMMUNITY','HOME','PRIVATE','PHARMACY','SOCIAL CARE','LOCAL AUTHORITY','NATIONAL GOVERNMENT','OTHER']"] | +
Dates and other temporal coverage information
+Date of the latest release of the dataset. If this is a regular release i.e. quarterly, or this is a static dataset please complete this alongside Periodicity. If this is Irregular or Continuously released please leave this blank. Notes: Periodicity and release date will be used to determine when the next release is expected. E.g. if the release date is documented as 01/01/2020 and it is now 20/04/2020 and there is a quarterly release schedule, the latest release will be calculated as 01/04/2020.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Release Date | ++ | False | +False | +['date', 'datetime', 'null'] | +
The start of the time period that the dataset provides coverage for. If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Start Date | ++ | False | +True | +['date', 'datetime', 'null'] | +
The end of the time period that the dataset provides coverage for. If the dataset is “Continuous” and has no known end date, please state continuous. If there are multiple cohorts in the dataset with varying end dates, please provide the latest date and use the description or the media attribute to provide more information.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| End Date | ++ | False | +False | +['date', 'datetime', "EndDateEnum['CONTINUOUS',null]", 'null'] | +
Please indicate the typical time-lag between an event and the data for that event appearing in the dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Time Lag | ++ | False | +True | +["TimeLag['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NO TIMELAG','NOT APPLICABLE','OTHER',null]"] | +
Please indicate the frequency of distribution release. If a dataset is distributed regularly please choose a distribution release periodicity from the constrained list and indicate the next release date. When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. If a dataset has been published and will remain static please indicate that it is static and indicated when it was released. If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Publishing Frequency | ++ | False | +True | +["Periodicity['STATIC','IRREGULAR','CONTINUOUS','BIENNIAL','ANNUAL','BIANNUAL','QUARTERLY','BIMONTHLY','MONTHLY','BIWEEKLY','WEEKLY','SEMIWEEKLY','DAILY','OTHER',null]"] | +
Accessibility information allows researchers to understand access, usage, limitations, formats, standards and linkage or interoperability with toolsets.
+This section includes information about how the data can be used and how it is currently being used
+Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. NOTE: we have extended the DUO to include a value for NO LINKAGE
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Use Limitation | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.DataUseLimitation.DataUseLimitation]', 'null'] | +
Please indicate fit here are any additional conditions set for use if any, multiple requirements may be provided. Please ensure that these restrictions are documented in access rights information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Use Requirements | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.DataUseRequirements.DataUseRequirements]', 'null'] | +
Please provide the text that you would like included as part of any citation that credits this dataset. This is typically just the name of the publisher. No employee details should be provided.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Citation Requirements' | ++ | False | +False | +["ShortDescription[{'anyOf': [{'maxLength': 1000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.ShortDescription.ShortDescription]]', 'null'] | +
None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Investigations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Please provide the keystone paper associated with the dataset. Also include a list of known citations, if available and should be links to existing resources where the dataset has been used or referenced. Please provide multiple entries, or if you are using a csv upload please provide them as a tab separated list.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Citations | ++ | False | +False | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'str', 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Doi.Doi]]', 'null'] | +
Accessibility information allows researchers to understand access, usage, limitations, formats, standards and linkage or interoperability with toolsets.
+Please provide details for the data access rights
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Rights | ++ | False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a brief description of the data access services that are available including: environment that is currently available to researchers;additional consultancy and services;any indication of costs associated. If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Service | ++ | False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide link(s) to a webpage detailing the commercial model for processing data access requests for the organisation (if available) Definition: Indication of commercial model or cost (in GBP) for processing each data access request by the data custodian.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Access Request Cost | ++ | False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Please provide an indication of the typical processing times based on the types of requests typically received.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access Request Duration | ++ | False | +False | +["DeliveryLeadTime['LESS 1 WEEK','1-2 WEEKS','2-4 WEEKS','1-2 MONTHS','2-6 MONTHS','MORE 6 MONTHS','VARIABLE','NOT APPLICABLE','OTHER',null]", 'null'] | +
Please use country code from ISO 3166-1 country codes and the associated ISO 3166-2 for regions, cities, states etc. for the country/state under whose laws the data subjects' data is collected, processed and stored.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Jurisdiction | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Isocountrycode.Isocountrycode]', 'null'] | +
Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Controller | ++ | False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Processor | ++ | False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Where access to data come from: TRE/SED, direct access, open acccess, varies based on project.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access/governance requirements | ++ | True | +False | +["AccessService['TRE/SDE','Direct access','Open access','Varies based on project']"] | +
Examples:
+Section includes technical attributes for language vocabularies, sizes etc. and gives researchers facts about and processing the underlying data in the dataset.
+List any relevant terminologies / ontologies / controlled vocabularies, such as ICD 10 Codes, NHS Data Dictionary National Codes or SNOMED CT International, that are being used by the dataset. If the controlled vocabularies are local standards, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition. Notes: More than one vocabulary may be provided.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Controlled Vocabulary | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.ControlledVocabulary.ControlledVocabulary]', 'null'] | +
List standardised data models that the dataset has been stored in or transformed to, such as OMOP or FHIR. If the data is only available in a local format, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Conforms To | ++ | True | +True | +["StandardisedDataModels[{'$defs': {'StandardisedDataModelsEnum': {'enum': ['HL7 FHIR', 'HL7 V2', 'HL7 CDA', 'HL7 CCOW', 'LOINC', 'DICOM', 'I2B2', 'IHE', 'OMOP', 'OPENEHR', 'SENTINEL', 'PCORNET', 'CDISC', 'NHS DATA DICTIONARY', 'NHS SCOTLAND DATA DICTIONARY', 'NHS WALES DATA DICTIONARY', 'LOCAL', 'OTHER'], 'title': 'StandardisedDataModelsEnum', 'type': 'string'}}, 'anyOf': [{'$ref': '#/$defs/StandardisedDataModelsEnum'}, {'type': 'null'}], 'default': null}]"] | +
Examples:
+This should list all the languages in which the dataset metadata and underlying data is made available.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Language | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Language.Language]', 'null'] | +
If multiple formats are available please specify. See application, audio, image, message, model, multipart, text, video, https://www.iana.org/assignments/media-types/media-types.xhtml Note: If your file format is not included in the current list of formats, please indicate other. If you are using the HOP you will be directed to a service desk page where you can request your additional format. If not please go to: https://metadata.atlassian.net/servicedesk/customer/portal/4 to request your format.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Format | ++ | False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[hdr_schemata.definitions.HDRUK.Format.Format]', 'null'] | +
This section includes information about related datasets that may have previously been linked, as well as indicating if there is the opportunity to link to other datasets in the future. If a dataset has been enriched and/or derivations, scores and existing tools are available this section allows providers to indicate this to researchers.
+If applicable, please provide the DOI of other datasets that have previously been linked to this dataset and their availability. If no DOI is available, please provide the title of the datasets that can be linked, where possible using the same title of a dataset previously onboarded to the HOP. Note: If all the datasets from Gateway organisation can be linked please indicate “ALL” and the onboarding portal will automate linkage across the datasets submitted.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Linked Datasets | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Union[hdr_schemata.definitions.HDRUK.Url.Url, NoneType, hdr_schemata.definitions.HDRUK.OneHundredFiftyCharacters.OneHundredFiftyCharacters]]', 'null'] | +
Indicate if derived datasets or predefined extracts are available and the type of derivation available. Notes. Single or multiple dimensions can be provided as a derived extract alongside the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Derivations | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.AbstractText.AbstractText]]', 'null'] | +
Please provide the URL of any analysis tools or models that have been created for this dataset and are available for further use. Multiple tools may be provided. Note: We encourage users to adopt a model along the lines of https://www.ga4gh.org/news/tool-registry-service-api-enabling-an-interoperable-library-of-genomics-analysis-tools/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Tools | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'typing.List[typing.Optional[hdr_schemata.definitions.HDRUK.Url.Url]]', 'null'] | +
Links to locations of information and or raw downloads of synthetic data associated with this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Synthetic Data Web Links | ++ | True | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]"] | +
Multiple observations about the dataset may be provided and users are expected to provide at least one observation
(1..*). We will be supporting the schema.org observation model (https://schema.org/Observation) with default values. Users will be encouraged to provide their own statistical populations as the project progresses.
Example:
<b> Statistical Population 1
</b> type: StatisticalPopulation populationType: Persons numConstraints: 0
<b> Statistical Population 2 </b> type: StatisticalPopulation populationType: Events numConstraints: 0 <b> Statistical Population 3 </b> type: StatisticalPopulation populationType: Findings numConstraints: 0 typeOf: Observation observedNode: <b> Statistical Population 1 </b> measuredProperty: count measuredValue: 32937 observationDate: “2017”"
Please select one of the following statistical populations for you observation
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Statistical Population | ++ | False | +True | +["StatisticalPopulationConstrained['PERSONS','EVENTS','FINDINGS']"] | +
Examples:
+Please provide the population size associated with the population type the dataset i.e. 1000 people in a study, or 87 images (MRI) of Knee Usage Note: Used with Statistical Population, which specifies the type of the population in the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured Value | ++ | False | +True | +['int'] | +
If SNOMED CT term does not provide sufficient detail, please provide a description that disambiguates the population type.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Disambiguating Description | ++ | False | +False | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide the date that the observation was made. Some datasets may be continuously updated and the number of records will change regularly, so the observation date provides users with the date that the analysis or query was run to generate the particular observation. Multiple observations can be made i.e. an observation of cumulative COVID positive cases by specimen on the 1/1/2021 could be 2M. On the 8/1/2021 a new observation could be 2.1M. Users can add multiple observations.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Observation Date | ++ | False | +True | +['date', 'datetime'] | +
Initially this will be defaulted to "COUNT"
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured Property | ++ | False | +True | +["MeasuredProperty[{'maxLength': 100, 'minLength': 1, 'type': 'string'}]"] | +
Structural metadata about tables, columns and values
+The name of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Name | ++ | False | +True | +['str', 'null'] | +
The name of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table Name | ++ | False | +False | +['str', 'null'] | +
The name of a table in a dataset.
+The name of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Name | ++ | False | +True | +['Name[{}]'] | +
The data type of values in the column
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Type | ++ | False | +True | +['str'] | +
A description of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column Description | ++ | False | +False | +['str', 'null'] | +
A True or False value, indicating if the field is sensitive or not
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sensitive | ++ | False | +True | +['bool'] | +
Metadata collection for Tissue Samples datasets
+The type of data that is associated with the samples in the study. Can be several values MIABIS-2.0-13
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Categories | ++ | True | +False | +["TissueDataCategoriesEnum['Biological samples','Survey data','Imaging data','Medical records','National registries','Genealogical records','Physiological/Biochemical measurements','Other']"] | +
The biospecimen saved from a biological entity for propagation e.g. testing, diagnostics, treatment or research purposes. Can be several values MIABIS-2.0-14
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Material Type | ++ | True | +False | +["MaterialTypeCategories['Blood','DNA','Faeces','Immortalized Cell Lines','Isolated Pathogen','Other','Plasma','RNA','Saliva','Serum','Tissue (Frozen)','Tissue (FFPE)','Urine']"] | +
Metadata related to the tissue sample
+Date when the tissue sample metadata was created
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Creation Date | ++ | False | +False | +['date', 'datetime', 'null'] | +
Ontology code for the anatomical site, this code must match an ICD-0-3 format
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Anatomical Site Ontology Code | ++ | False | +False | +["ICD_0_3[{'anyOf': [{'pattern': '^[C\\d]{3}\\.\\d{4}\\/\\d{1,4}$', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The type of the sample collection. Can be several values MIABIS-2.0-16
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection Type | ++ | False | +False | +["TissueCollectionTypeEnum['Case-control','Cohort','Cross-sectional','Longitudinal','Twin-study','Quality control','Population-based','Disease specific','Birth cohort','Other']", 'null'] | +
tissueSampleCollections.materialType to coverage.materialTypetissueSampleCollections.*accessServiceCategory to remove requirement on this to be a URLDeliveryLeadTimeSystem dataset identifier.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset identifier | +N/A | +False | +True | +["Uuidv4[{'maxLength': 36, 'minLength': 36, 'pattern': '^[a-fA-F0-9]{8}-[a-fA-F0-9]{4}-[a-fA-F0-9]{4}-[a-fA-F0-9]{4}-[a-fA-F0-9]{12}$', 'type': 'string'}]", "Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Dataset metadata version.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset Version | +Dataset metadata version should follow standard SEMVER naming conventions (https://semver.org). For example: 1.1.0 major.minor.patch. Major: Significant/breaking changes. Minor: New features and bug fixes. Patch: Minor fixes without new features. |
+False | +True | +["Semver[{'pattern': '^([0-9]+)\\.([0-9]+)\\.([0-9]+)$', 'type': 'string'}]"] | +
Examples:
+A list of persistent identifiers and version numbers for previous versions of metadata for this dataset
+Version number used for previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision version | ++ | False | +True | +["Semver[{'pattern': '^([0-9]+)\\.([0-9]+)\\.([0-9]+)$', 'type': 'string'}]"] | +
Examples:
+Some url with a reference to the record of a previous version of this dataset
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| revision url | ++ | False | +True | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Datetime stamp of when this metadata version was initially issued
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Metadata Issued Datetime | ++ | False | +True | +['datetime'] | +
Datetime stamp of when this metadata was last modified
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Last Modified Datetime | ++ | False | +True | +['datetime'] | +
Summary of metadata describing key pieces of information.
+Title of the dataset limited to 150 characters. It should provide a short description of the dataset and be unique across the gateway. If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. Good titles should summarise the content of the dataset and if relevant, the region the dataset covers.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Title | +- The title should provide a short description of the dataset and be unique across the gateway. - If your title is not unique, please add a prefix with your organisation name or identifier to differentiate it from other datasets within the Gateway. - If an accronym is widely used the dataset name, please add it in brackets () at the end of the title. - Good titles should summarise the content of the dataset and if relevant, the region the dataset covers. - Example: North West London COVID-19 Patient Level Situation Report |
+False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"] | +
Examples:
+Provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. The optimal length is one paragraph (limited to 255 characters) and effective abstracts should avoid long sentences and abbreviations where possible.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset abstract | +- The abstract should provide a clear and brief descriptive signpost for researchers who are searching for data that may be relevant to their research. - The abstract should allow the reader to determine the scope of the data collection and accurately summarise its content. - Effective abstracts should avoid long sentences and abbreviations where possible. - Note: Researchers will view Titles and the first line of Abstracts (list view) when searching for datasets and choosing whether to explore their content further. - Abstracts should be different from the full description for a dataset. - Example: CPRD Aurum contains primary care data contributed by General Practitioner (GP) practices using EMIS Web® including patient registration information and all care events that GPs have chosen to record as part of their usual medical practice. |
+False | +True | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]"] | +
Examples:
+This is the organisation responsible for running or supporting the data access request process, as well as enquiries about a dataset. In most this will be the same as the HDR UK Organisation (Hub or Alliance Member). However, in some cases this will be different i.e. Tissue Directory are an HDR UK Gateway organisation but coordinate activities across a number of data publishers i.e. Cambridge Blood and Stem Cell Biobank.
+Please provide a Research Organization Registry (ROR) identifier (see https://ror.org/) for your organisation.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| identifier | +Example: https://ror.org/053fq8t95 If your organisation does not have a ROR identifier please use the “suggest and institute” function here: https://docs.google.com/forms/d/e/1FAIpQLSdJYaMTCwS7muuTa-B_CnAtCSkKzt19lkirAKG4u7umH9Nosg/viewform |
+False | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
The organisation responsible for running or supporting the data access request process, as well as publishing and maintaining the metadata.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Name of data provider | +In most this will be the same as the Team you have on the Gateway. However, in some cases this will be different. For example, Tissue Directory are a Team on the Gateway but coordinate activities across a number of Data Providers such as Cambridge Blood and Stem Cell Biobank. | +False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"] | +
Please provide a logo associated with the Gateway Organisation using a valid URL. The following formats will be accepted .jpg, .png or .svg.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Logo | ++ | False | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide a URL that describes the organisation.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Description | ++ | False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Organisation contact point(s) which will be used for receiving queries from HDR, and enquiries and data access requests from Researchers.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| contact point | ++ | False | +True | +["EmailAddress[{'anyOf': [{'format': 'email', 'type': 'string'}, {'type': 'null'}]}]", 'List'] | +
Please indicate if the organisation is an Alliance Member or a Hub.'
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Organisation Membership | ++ | False | +False | +["MemberOf['HUB','ALLIANCE','OTHER','NCS']", 'null'] | +
Input the number of people captured within the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset population size | +This number informs a filter for Researchers to differentiate dataset search results based on the number of people in the dataset, and does not pull from the Observations fields. The filter also allows for Researchers to search datasets which have no population size reported, but will not pull any population size captured in the Observations section. | +False | +True | +['int'] | +
Please provide a list of relevant and specific keywords that can improve the search engine optimisation (SEO) of your dataset as a comma separated list. Notes: Onboarding portal will suggest keywords based on title, abstract and description. We are compiling a standardised list of keywords and synonyms across datasets to make filtering easier for users.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Keywords | +- Please provide relevant and specific keywords that can improve the search engine optimization of your dataset. - Please enter one keyword at a time and click Add New Field to add further keywords. - Text from the title is automatically included in the search, there is no need to include this in the keywords. - Include words that researcher may include in their searches. |
+True | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]"] | +
Examples:
+DOI associated to this dataset. Find out more about DOIs here: https://www.doi.org/the-identifier/what-is-a-doi/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Digital Object Identifier (DOI) for dataset | +- Please note: This is not the DOI of the publication(s) associated with the dataset. - All HDR UK registered datasets should either have a (DOI) or be working towards obtaining one. - If a DOI is available, please provide the DOI. - What happens if I do not have a DOI?: Contact your academic organisation to find out if there is an existing relationship with a DOI provider. If that is not available, sites such as figshare offer free services to mint a DOI for your dataset. Subsequent versions of the Metadata Exchange will provide a DOI minting service. |
+False | +False | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide a valid email address that can be used to coordinate data access requests.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Contact point | +Organisations are expected to provide a dedicated email address associated with the data access request process. If no contact point is provided in this field, this field will be defaulted to the teams support email provided in the teams setting. Note: An employee's email address can only be provided on a temporary basis and if one is provided, you must obtain explicit consent for this purpose. |
+False | +True | +["EmailAddress[{'anyOf': [{'format': 'email', 'type': 'string'}, {'type': 'null'}]}]"] | +
Examples:
+Alternate dataset identifiers or local identifiers.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Alternate dataset identifiers | ++ | False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'List', 'null'] | +
Documentation can include a rich text description of the dataset or links to media such as documents, images, presentations, videos or links to data dictionaries, profiles or dashboards. Organisations are required to confirm that they have permission to distribute any additional media.
+A free-text description of the dataset.
A URL can also be provided as the description of the dataset.
Gateway Feature: Keywords and text may be extracted out of the description and indexed for search.
| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Description | +- An HTML account of the data that provides context and scope of the data, limited to 3000 characters, and/or a resolvable URL that describes the dataset. - Additional information can be recorded and included using the Associated media field. |
+False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]"] | +
Please provide any media associated with the Gateway Organisation using a valid URI for the content. This is an opportunity to provide additional context that could be useful for researchers wanting to understand more about the dataset and its relevance to their research question. The following formats will be accepted .jpg, .png or .svg, .pdf, .xslx or .docx. Note: media asset can be hosted by the organisation or uploaded using the onboarding portal.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Associated media | +- Please provide any media associated with the Gateway Organisation using a valid URL for the content. - This is an opportunity to provide additional context that could be useful for researchers wanting to understand more about the dataset and its relevance to their research question. - Note: media assets should be hosted by the organisation. - Example: This could be a link to a PDF Document that describes methodology or further detail about the datasets, or a graph or chart that provides further context about the dataset. - If you are providing multiple links for associated media, we recommend that you separate these with a comma. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'List', 'null'] | +
Examples:
+Indicate whether this dataset is currently available for Researchers to request access.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset pipeline status | +If a dataset is being prepared for sharing but not yet ready and available for researchers to apply for access, select 'Not available'. If Researchers can currently apply for access to the dataset, select 'Available'. | +False | +False | +["Pipeline['Available','Not available']", 'null'] | +
This information includes attributes for geographical and temporal coverage, cohort details etc. to enable a deeper understanding of the dataset content so that researchers can make decisions about the relevance of the underlying data.
+The geographical area covered by the dataset. It is recommended that links are to entries in one of the recommended standards:
- For locations in the UK: ONS standards
- For locations in other countries: ISO 3166-1 & ISO 3166-2
| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Geographic coverage | +- The geographical area covered by the dataset. - Please provide a valid location. - For locations in the UK, this location should conform to ONS standards. - For locations in other countries we use ISO 3166-1 & ISO 3166-2. |
+False | +False | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'List'] | +
Examples:
+Please indicate the minimum age in years of participants in the dataset as a whole number (integer).
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Minimum age range | +- Please indicate the minimum of the age range in whole years of participants in the dataset. - What if my dataset has participants of all “All Ages” or “Any Ages”?: In that case, please enter 0. |
+False | +False | +['int', 'null'] | +
Examples:
+Please indicate the maximum age in years of participants in the dataset as a whole number (integer).
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Maximum age range | +- Please indicate the maximum of the age range in whole years of participants in the dataset. - What if my dataset has participants of all “All Ages” or “Any Ages”?: In that case, please enter 150. |
+False | +False | +['int', 'null'] | +
Examples:
+The URL where a Researcher can learn more about the completeness of the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset coverage/completeness/quality | +If your organisation has a publicly available site which contains information on the completeness of a dataset, add that URL here. Example: https://bhfdatasciencecentre.org/dashboard/ |
+False | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+The type of biospecimen saved from a biological entity.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Biological sample availability | +Indicate the specimen type, can be several values from the list below: - Availability of physical samples associated with the dataset. - If samples are available, please indicate the types of samples that are available. - More than one type may be provided. - If samples are not yet available, please provide “Availability to be confirmed”. - If samples are not available, then please provide “Not available”. - Not available: Samples associated with the dataset are not available. - Bone marrow: Bone marrow samples associated with the data are available. - Cancer cell lines: Cancer cell line samples associated with the data are available. - CDNA/MRNA: CDNA/MRNA samples associated with the data are available. - Core biopsy: Core biopsy samples associated with the data are available. - DNA: DNA samples associated with the data are available. - Entire body organ: Entire body organ associated with the data are available. - Faeces: Faeces samples associated with the data are available. - Immortalized cell lines: Immortalized cell line samples associated with the data are available. - Isolated pathogen: Isolated pathogen associated with the data are available. - MicroRNA: MicroRNA samples associated with the data are available. - Peripheral blood cells: Peripheral blood cell samples associated with the data are available. - Plasma: Plasma samples associated with the data are available. - PM Tissue: PM Tissue samples associated with the data are available. - Primary cells: Primary cell samples associated with the data are available. - RNA: RNA samples associated with the data are available. - Saliva: Saliva samples associated with the data are available. - Serum: Serum samples associated with the data are available. - Swabs: Swab samples associated with the data are available. - Tissue: Tissue samples associated with the data are available. - Urine: Urine samples associated with the data are available. - Whole blood: Whole blood samples associated with the data are available. - Availability to be confirmed: Availability of samples is currently being confirmed. - Other: Other types of sample available. |
+True | +False | +["MaterialTypeCategoriesV2['None/not available','Bone marrow','Cancer cell lines','CDNA/MRNA','Core biopsy','DNA','Entire body organ','Faeces','Immortalized cell lines','Isolated pathogen','MicroRNA','Peripheral blood cells','Plasma','PM Tissue','Primary cells','RNA','Saliva','Serum','Swabs','Tissue','Urine','Whole blood','Availability to be confirmed','Other']"] | +
If known, what is the typical time span that a patient appears in the dataset (follow up period). In a prospective cohort study, after baseline information is collected, participants are followed “longitudinally” i.e. new information is collected about them for a period of time afterward. This is known as the “follow up period”. What is the typical time span of follow up, e.g. 1 year, 5 years? If there are multiple cohorts in the dataset with varying follow up periods, please provide the longest follow up period.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Follow-up | +If known, please indicate the typical time span that a patient appears in the dataset (follow up period). -0 - 6 MONTHS: Data typically available for a patient over a 0-6 month period. -6 - 12 MONTHS: Data typically available for a patient over a 6-12 month period. -1 - 10 YEARS: Data typically available for a patient over a 1-10 year period. -> 10 YEARS: Data typically available for a patient for over a 10 year period. -CONTINUOUS: Data for patients is being regularly added to and updated. -UNKNOWN: Timespan is Unknown. -OTHER: Data available for a patient over another time period. |
+False | +False | +["Followup['0 - 6 MONTHS','6 - 12 MONTHS','1 - 10 YEARS','> 10 YEARS','UNKNOWN','CONTINUOUS','OTHER',null]", 'null'] | +
Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Patient pathway description | +- Please indicate if the dataset is representative of the patient pathway and any limitations the dataset may have with respect to pathway coverage. - This could include if the dataset is from a single speciality or area, a single tier of care, linked across two tiers (e.g. primary and secondary care), or an integrated care record covering the whole patient pathway. |
+False | +False | +["Description[{'anyOf': [{'maxLength': 10000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Male, Female, Other
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Gender | +Options are limited to Male/Female/Other. | +True | +False | +["GenderType['Male','Female','Other']"] | +
Provenance information allows researchers to understand data within the context of its origins and can be an indicator of quality, authenticity and timeliness.
+Coverage by origin (geographical and situations).
+Please indicate the purpose(s) that the dataset was collected.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Purpose of dataset collection | +- Research cohort: Data collected for a defined group of people. - Study: Data collected for a specific research study. - Disease registry: Data collected as part of a disease registry. - Trial: Data collected for as part of a clinical trial. - Care: Data collected as part of routine clinical care. - Audit: Data collected as part of an audit programme. - Administrative: Data collected for administrative and management information purposes. - Financial: Data collected either for payments or for billing. - Statutory: Data collected in compliance with statutory requirements. - Other: Data collected for other purpose. |
+True | +False | +["PurposeV2['Research cohort','Study','Disease registry','Trial','Care','Audit','Administrative','Financial','Statuatory','Other',null]"] | +
The topic areas to which the dataset content relates.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset type | +Types include those listed below. Datasets can have more than one type associated. - Health and disease: Includes any data related to mental health, cardiovascular, cancer, rare diseases, metabolic and endocrine, neurological, reproductive, maternity and neonatology, respiratory, immunity, musculoskeletal, vision, renal and urogenital, oral and gastrointestinal, cognitive function or hearing. - Treatments/Interventions: Includes any data related to treatment or interventions related to vaccines or which are preventative or therapeutic in nature. - Measurements/Tests: Includes any data related to laboratory or other diagnostics. - Imaging types: Includes any data related to CT, MRI, PET, x-ray, ultrasound or pathology imaging. - Imaging area of the body: Indicates whether the dataset relates to head, chest, arm abdomen or leg imaging. - Omics: Includes any data related to proteomics, transcriptomics, epigenomics, metabolomics, multiomics, metagenomics or genomics. - Socioeconomic: Includes any data related to education, crime and justice, ethnicity, housing, labour, ageing, economics, marital status, social support, deprivation, religion, occupation, finances or family circumstances. - Lifestyle: Includes any data related to smoking, physical activity, dietary habits or alcohol. - Registry: Includes any data related to disease registries for research, national disease registries, audits, or birth and deaths records. - Environment and energy: Includes any data related to the monitoring or study of environmental or energy factors or events. - Information and communication: Includes any data related to the study or application of information and communication. - Politics: Includes any data related to political views, activities, voting, etc. |
+False | +True | +["DatasetTypeV2['Health and disease','Treatments/Interventions','Measurements/Tests','Imaging types','Imaging area of the body','Omics','Socioeconomic','Lifestyle','Registry','Environment and energy','Information and communication','Politics']"] | +
The sub-type of the dataset content. Multiomics is selected on behalf of the submitter if more that one omics datasetSubType ('proteomics', 'transcriptomics', 'epigenomics', 'metabolomics', 'metagenomics', 'genomics', 'lipidomics') is selected
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset sub-type | +Sub-types include those listed below under each data type. Datasets can have more than one sub-type associated. - Health and disease: Includes any data related to mental health, cardiovascular, cancer, rare diseases, metabolic and endocrine, neurological, reproductive, maternity and neonatology, respiratory, immunity, musculoskeletal, vision, renal and urogenital, oral and gastrointestinal, cognitive function or hearing. - Treatments/Interventions: Includes any data related to treatment or interventions related to vaccines or which are preventative or therapeutic in nature. - Measurements/Tests- Includes any data related to laboratory or other diagnostics. - Imaging types: Includes any data related to CT, MRI, PET, x-ray, ultrasound or pathology imaging. - *Imaging area of the body: Indicates whether the dataset relates to head, chest, arm abdomen or leg imaging. - Omics: Includes any data related to proteomics, transcriptomics, epigenomics, metabolomics, multiomics, metagenomics or genomics. Multiomics is selected on behalf of the submitter if more that one omics datasetSubType is selected. - Socioeconomic: Includes any data related to education, crime and justice, ethnicity, housing, labour, ageing, economics, marital status, social support, deprivation, religion, occupation, finances or family circumstances. - *Lifestyle: Includes any data related to smoking, physical activity, dietary habits or alcohol. - Registry: Includes any data related to disease registries for research, national disease registries, audits, or birth and deaths records. - Environment and energy: Includes any data related to the monitoring or study of environmental or energy factors or events. - *Information and communication: Includes any data related to the study or application of information and communication. - Politics*: Includes any data related to political views, activities, voting, etc. |
+False | +True | +["DatasetSubType['Mental health','Cardiovascular','Cancer','Rare diseases','Metabolic and Endocrine','Neurological','Reproductive','Maternity and neonatology','Respiratory','Immunity','Musculoskeletal','Vision','Renal and urogenital','Oral and Gastrointestinal','Cognitive Function','Hearing','Others','Vaccines','Preventive','Therapeutic','Laboratory','Other diagnostics','CT','MRI','PET','X-ray','Ultrasound','Pathology','Head','Chest','Arm','Abdomen','Leg','Proteomics','Transcriptomics','Epigenomics','Metabolomics','Multiomics','Metagenomics','Genomics','Education','Crime and Justice','Ethnicity','Housing ','Labour','Ageing ','Economics','Marital status','Social support','Deprivation','Religion','Occupation','Finances','Family circumstance','Smoking','Physical Activity','Dietary habits','Alcohol','Disease Registry (research)','National Disease Registries and Audits','Births and Deaths','Not applicable']", 'null'] | +
Please indicate the source of the data extraction.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Source of data extraction | +- EPR: Data Extracted from Electronic Patient Record. - Electronic survey: Data has been extracted from electronic surveys. - LIMS: Data has been extracted from a laboratory information management system. - Paper-based: Data has been extracted from paper forms. - Free text NLP: Data has been extracted from unstructured freetext using natural language processing. - Machine generated: Data has been machine generated i.e. imaging. - Other: Data has been extracted by other means. |
+True | +False | +["SourceV2['EPR','Electronic survey','LIMS','Paper-based','Free text NLP','Machine generated','Other']"] | +
Please indicate the setting(s) where data was collected. Multiple settings may be provided.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Collection source setting | +- Cohort, study, trial: Cohort, study or trial data collection as part of protocol. - Clinic: Specific clinic such as antenatal clinic. - Primary care - Referrals: General medical practitioner referral to another service. - Primary care - Clinic: General medical practitioner practice. - Primary care - Out of hours: General medical practitioner care or advice outside of standard hours. - Secondary care - Accident and emergency: Accident emergency department. - Secondary care - Outpatients: Outpatient care. - Secondary care - In-patients: In-patient care. - Secondary care - Ambulance: Care provided in association with ambulance service. - Secondary care - ICU: Intensive care units, also referred to as critical care units (CCUs) or intensive therapy units (ITUs). - Prescribing - Community pharmacy: Pharmacy based in the community. - Prescribing - Community pharmacy: Pharmacy based in a hospital setting. - Patient report outcome: Reported by patient. - Wearables: Data collection devices worn on the body. - Local authority: Local authority or entity associated with a local authority. - National government: National government or entity associated with the national government. - Community: Community settings. - Services: Services such as drug misuse or blood transfusion. - Home: Home setting. - Private: Private medical clinic. - Social care - Health care at home: service provided in the home or residence of a person. - Social care - Other social data: service provided in a setting outside of the person's home or residence. - Census: collected as part of census. - Other: Other setting. |
+True | +False | +["SettingV2['Cohort, study, trial','Clinic','Primary care - Referrals','Primary care - Clinic','Primary care - Out of hours','Secondary care - Accident and Emergency','Secondary care - Outpatients','Secondary care - In-patients','Secondary care - Ambulance','Secondary care - ICU','Prescribing - Community pharmacy','Prescribing - Hospital','Patient report outcome','Wearables','Local authority','National government','Community','Services','Home','Private','Social care - Health care at home','Social care - Other social data','Census','Other',null]"] | +
Indicate whether usage of imaging contrast is captured within the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Image contrast | +If any contrast media or contrast agents were used in creating the images within the dataset and the contrast is known, mark 'Yes'. If this information is not known or not captured, indicate 'Not stated'. If there was no contrast used in the images, mark 'No'. | +False | +False | +["Ternary['Yes','No','Not stated']", 'null'] | +
Dates and other temporal coverage information.
+Please indicate the frequency of distribution release. If a dataset is distributed regularly please choose a distribution release periodicity from the constrained list and indicate the next release date. When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. If a dataset has been published and will remain static please indicate that it is static and indicated when it was released. If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Publishing frequency | +Please indicate the frequency of publishing. - If a dataset is published regularly please choose a publishing periodicity from the constrained list and indicate the next release date. - When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. - If a dataset has been published and will remain static please indicate that it is static and indicate when it was released. - If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. - If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. - Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/. Options: - Static: Dataset published once. - Irregular: Dataset published at uneven intervals. - Continuous: Dataset published without interruption. - Biennial: Dataset published every two years. - Annual: Dataset published occurs once a year. - Biannual: Dataset published twice a year. - Quarterly: Dataset published every three months. - Bimonthly: Dataset published every two months. - Monthly: Dataset published once a month. - Biweekly: Dataset published every two weeks. - Weekly: Dataset published once a week. - Twice weekly: Dataset published twice a week. - Daily: Dataset published once a day. - Other: Dataset published using other interval. |
+False | +True | +["PeriodicityV2['Static','Irregular','Continuous','Biennial','Annual','Biannual','Quarterly','Bimonthly','Monthly','Biweekly','Weekly','Twice a week','Daily','Other',null]"] | +
Date of the latest release of the dataset. If this is a regular release i.e. quarterly, or this is a static dataset please complete this alongside Periodicity. If this is Irregular or Continuously released please leave this blank. Notes: Periodicity and release date will be used to determine when the next release is expected. E.g. if the release date is documented as 01/01/2020 and it is now 20/04/2020 and there is a quarterly release schedule, the latest release will be calculated as 01/04/2020.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Distribution release date | +- Please indicate the frequency the dataset is published. - If a dataset is published regularly please choose a publishing periodicity from the constrained list and indicate the next release date. - When the release date becomes historical, a new release date will be calculated based on the publishing periodicity. - If a dataset has been published and will remain static please indicate that it is static and indicate when it was released. - If a dataset is released on an irregular basis or “on-demand” please indicate that it is Irregular and leave release date as null. - If a dataset can be published in real-time or near-real-time please indicate that it is continuous and leave release date as null. - Notes: see https://www.dublincore.org/specifications/dublin-core/collection-description/frequency/ |
+False | +False | +['date', 'datetime', 'null'] | +
The start of the time period that the dataset provides coverage for. If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Start date | +- The start of the time period that the dataset provides coverage for. - If there are multiple cohorts in the dataset with varying start dates, please provide the earliest date and use the description or the media attribute to provide more information. |
+False | +True | +['date', 'datetime'] | +
The end of the time period that the dataset provides coverage for. If the dataset is “Continuous” and has no known end date, please state continuous. If there are multiple cohorts in the dataset with varying end dates, please provide the latest date and use the description or the media attribute to provide more information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| End date | +- The end of the time period that the dataset provides coverage for. - If the dataset is “Continuous” and has no known end date, please leave blank. - If there are multiple cohorts in the dataset with varying end dates, please provide the latest date. |
+False | +False | +['date', 'datetime', "EndDateEnum['CONTINUOUS',null]", 'null'] | +
Please indicate the typical time-lag between an event and the data for that event appearing in the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Time lag | +Please indicate the typical time-lag between an event and the data for that event appearing in the dataset. - Less than 1 week: Typical time lag of less than a week. - 1-2 weeks: Typical time-lag of one to two weeks. - 2-4 weeks: Typical time-lag of two to four weeks. - 1-2 months: Typical time-lag of one to two months. - 2-6 months: Typical time-lag of two to six months. - 6 months plus: Typical time-lag of more than six months. - Variable: Variable time-lag. - Not applicable: Not Applicable i.e. static dataset. - Other: Other time-lag. |
+False | +True | +["TimeLagV2['Less than 1 week','1-2 weeks','2-4 weeks','1-2 months','2-6 months','6 months plus','Variable','Not applicable','Other']"] | +
Accessibility information allows researchers to understand access, usage, limitations, formats, standards and linkage or interoperability with toolsets.
+This section includes information about how the data can be used and how it is currently being used.
+Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. NOTE: we have extended the Data Use Ontology to include a value for NO LINKAGE.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data use limitation | +Please provide an indication of consent permissions for datasets and/or materials, and relates to the purposes for which datasets and/or material might be removed, stored or used. - General research use: This data use limitation indicates that use is allowed for general research use for any research purpose. - Genetic studies only: This data use limitation indicates that use is limited to genetic studies only (i.e., no phenotype-only research). - No general methods research: This data use limitation indicates that use includes methods development research(e.g., development of software or algorithms) only within the bounds of other use limitations. - No restriction: This data use limitation indicates there is no restriction on use. - Research-specific restrictions: This data use limitation indicates that use is limited to studies of a certain research type. - Research use only: This data use limitation indicates that use is limited to research purposes (e.g., does not include its use in clinical care). - No linkage: This data use limitation indicates there is a restriction on linking to any other datasets |
+True | +False | +["DataUseLimitationV2['General research use','Genetic studies only','No general methods research','No restriction','Research-specific restrictions','Research use only','No linkage']"] | +
Please indicate fit here are any additional conditions set for use if any, multiple requirements may be provided. Please ensure that these restrictions are documented in access rights information.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data use requirements | +- Please indicate if there are any additional conditions set for use if any, multiple requirements may be provided. - Please ensure that these restrictions are documented in access rights information. - Collaboration required: This requirement indicates that the requestor must either agree to join a research consortium or collaborate with the primary study investigator(s). - Ethics approval required: This requirement indicates that the requestor must provide documentation of local institutional review board (IRB)/ ethics review board (ERB) approval. - Geographical restrictions: This requirement indicates that use is limited to within a specific geographic region. - Institution-specific restrictions: This requirement indicates that use is limited to use within an approved institution. - Not for profit use: This requirement indicates that use of the data is limited to not-for-profit organizations and not-for-profit use, non-commercial use. - Project-specific restrictions: This requirement indicates that use is limited to use within an approved project. - Publication moratorium: This requirement indicates that requestor agrees not to publish results of studies until a specific date. - Publication required: This requirement indicates that requestor agrees to make results of studies using the data available to the larger scientific community. - Return to database or resource: This requirement indicates that the requestor must return derived/enriched data to the database/resource. - Time limit on use: This requirement indicates that use is approved for a specific number of months. - User-specific restriction: This requirement indicates that use is limited to use by approved users. |
+True | +False | +["DataUseRequirementsV2['Collaboration required','Ethics approval required','Geographical restrictions','Institution-specific restrictions','Not for profit use','Project-specific restrictions','Publication moratorium','Publication required','Return to database or resource','Time limit on use','User-specific restriction']"] | +
Please provide the text that you would like included as part of any citation that credits this dataset. This is typically just the name of the publisher. No employee details should be provided.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Citation requirements | +- Please provide the text that you would like included as part of any citation that credits this dataset. - This is typically just the name of the publisher. No employee details should be provided. - To add multiple entries, please click on '+' symbol to enter each separate website. - Example: National Services Scotland |
+False | +False | +["ShortDescription[{'anyOf': [{'maxLength': 1000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'List', 'null'] | +
Examples:
+Accessibility information allows researchers to understand access, usage, limitations, formats, standards and linkage or interoperability with toolsets.
+Please provide details for the data access rights.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access rights | +- The URL of a webpage where the data access request process and/or guidance is provided. If there is more than one access process i.e. industry vs academic please provide both separated by a comma. - If such a resource or the underlying process doesn’t exist, please provide “In Progress”, until both the process and the documentation are ready. |
+False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]"] | +
The method a Researcher will use to access the dataset, if approved.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access method category | +Select the category which best matches how a Researcher will access the dataset, if approved for access. If the access method changes based on the data required for the project (e.g. the dataset can be shared via secure email if the extract is fully anonymised, but must be accessed via a TRE/SDE if the extract is only pseudonymised) then select 'varies based on project'. | +False | +False | +["AccessService['TRE/SDE','Direct access','Open access','Varies based on project']", 'null'] | +
Examples:
+Indication of the application type to enable research access.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access mode | +Indicate whether a Researcher will need to join a consortium to enable access to the dataset, or if a Researcher will need to submit an application which describes a specific project and required dataset fields required. | +False | +False | +["AccessMode['Join research consortium','New project']", 'null'] | +
Please provide a brief description of the data access services that are available including: environment that is currently available to researchers; additional consultancy and services; any indication of costs associated. If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access service description | +Please provide a brief description of the data access services that are available including: - environment that is currently available to researchers - additional consultancy and services - any indication of costs associated If no environment is currently available, please indicate the current plans and timelines when and how data will be made available to researchers. Note: This value will be used as default access environment for all datasets submitted by the organisation. However, there will be the opportunity to overwrite this value for each dataset. |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Please provide link(s) to a webpage or description detailing the service or cost model for processing data access requests.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Access request cost | +This information should cover the costs and/or services available to different audiences (i.e. academic, commercial, non-UK, etc.). This can be in the form of text or a URL. | +False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide an indication of the typical processing times based on the types of requests typically received.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Time to dataset access | +- Less than 1 week: Access request process typically processed in less than a week. - 1-2 weeks: Access request process typically processed in one to two weeks. - 2-4 weeks: Access request process typically processed in two to four weeks. - 1-2 months: Access request process typically processed in one to two months. - 2-6 months: Access request process typically processed in two to six months. - More than 6 months: Access request process typically processed in more than six months. - Variable: Access request lead time is variable. - Not applicable: Access request process duration is not applicable. - Other: If the typical timeframe does not fit into the broad ranges i.e. lightweight application vs linked data application, please choose “Other” and indicate the typical timeframe within the description for the dataset. |
+False | +False | +["DeliveryLeadTimeV2['Less than 1 week','1-2 weeks','2-4 weeks','1-2 months','2-6 months','More than 6 months','Variable','Not applicable','Other']", 'null'] | +
Please use country code from ISO 3166-1 country codes and the associated ISO 3166-2 for regions, cities, states etc. for the country/state under whose laws the data subjects' data is collected, processed and stored.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Jurisdiction | +A full list of country codes can be found here (alpha-2 column): https://www.iso.org/obp/ui/#search/code/ | +False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'List', 'null'] | +
Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Controller | +- Data Controller means a person/entity who (either alone or jointly or in common with other persons/entities) determines the purposes for which and the way any Data Subject data, specifically personal data or are to be processed. - Notes: For most organisations this will be the same as the Data Custodian of the dataset. If this is not the case, please indicate that there is a different controller. - If there is a different controller please complete the Data Processor attribute to indicate if the Data Custodian is a Processor rather than the Data Controller. - In some cases, there may be multiple Data Controllers i.e. GP data. If this is the case, please indicate the fact in a free-text field and describe the data sharing arrangement or a link to it, so that this can be understood by research users. - Example: NHS England' |
+False | +True | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data Processor | +A Data Processor, in relation to any Data Subject data, specifically personal data, means any person/entity (other than an employee of the data controller) who processes the data on behalf of the data controller. - Notes: Required to complete if the Data Custodian is the Data Processor rather than the Data Controller. - If the Publisher is also the Data Controller please provide “Not Applicable”. - Examples: Not Applicable, SAIL |
+False | +False | +["LongDescription[{'anyOf': [{'maxLength': 50000, 'minLength': 2, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Examples:
+Section includes technical attributes for language vocabularies, sizes etc. and gives researchers facts about and processing the underlying data in the dataset.
+List any relevant terminologies / ontologies / controlled vocabularies, such as ICD 10 Codes, NHS Data Dictionary National Codes or SNOMED CT International, that are being used by the dataset. If the controlled vocabularies are local standards, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition. Notes: More than one vocabulary may be provided.
+List standardised data models that the dataset has been stored in or transformed to, such as OMOP or FHIR. If the data is only available in a local format, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Alignment with standardised data models | +- List standardised data models that the dataset has been stored in or transformed to, such as OMOP or FHIR. - If the data is only available in a local format, please make that explicit. If you are using a standard that has not been included in the list, please use “other” and contact support desk to ask for an addition. - HL7 FHIR: https://www.hl7.org/fhir/. - HL7 V2: https://www.hl7.org/implement/standards/product_section.cfm?section=13. - HL7 CDA: https://www.hl7.org/implement/standards/product_section.cfm?section=10. - HL7 CCOW: https://www.hl7.org/implement/standards/product_section.cfm?section=16. - DICOM: https://www.dicomstandard.org/. - I2B2: https://www.i2b2.org/. - IHE: https://www.ihe.net/resources/profiles/. - OMOP: https://www.ohdsi.org/data-standardization/the-common-data-model/. - openEHR: https://www.openehr.org/. - Sentinel: https://www.sentinelinitiative.org/sentinel/data/distributed-database-common-data-model. - PCORnet: https://pcornet.org/data-driven-common-model/. - CDISC: https://www.cdisc.org/standards/data-exchange/odm. - Local: In-house developed data model. - Other: Other standardised data model. - NHS Data Dictionary: https://www.datadictionary.nhs.uk/. - NHS Scotland Data Dictionary: https://www.ndc.scot.nhs.uk/Data-Dictionary/. - NHS Wales Data Dictionary: https://www.datadictionary.wales.nhs.uk/. |
+True | +True | +["StandardisedDataModels[{'$defs': {'StandardisedDataModelsEnum': {'enum': ['HL7 FHIR', 'HL7 V2', 'HL7 CDA', 'HL7 CCOW', 'LOINC', 'DICOM', 'I2B2', 'IHE', 'OMOP', 'OPENEHR', 'SENTINEL', 'PCORNET', 'CDISC', 'NHS DATA DICTIONARY', 'NHS SCOTLAND DATA DICTIONARY', 'NHS WALES DATA DICTIONARY', 'LOCAL', 'OTHER'], 'title': 'StandardisedDataModelsEnum', 'type': 'string'}}, 'anyOf': [{'$ref': '#/$defs/StandardisedDataModelsEnum'}, {'type': 'null'}], 'default': null}]"] | +
Examples:
+This should list all the languages in which the dataset metadata and underlying data is made available complaint with ISO 639.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Language | +https://www.iso.org/iso-639-language-code - aa: Afar - ab: Abkhazian - af: Afrikaans - ak: Akan - sq: Albanian - am: Amharic - ar: Arabic - an: Aragonese - hy: Armenian - as: Assamese - av: Avaric - ae: Avestan - ay: Aymara - az: Azerbaijani - ba: Bashkir - bm: Bambara - eu: Basque - be: Belarusian - bn: Bengali - bh: Bihari languages - bi: Bislama - bo: Tibetan - bs: Bosnian - br: Breton - bg: Bulgarian - my: Burmese - ca: Catalan; Valencian - cs: Czech - ch: Chamorro - ce: Chechen - zh: Chinese - cu: Church Slavic; Old Slavonic; Church Slavonic; Old Bulgarian; Old Church Slavonic - cv: Chuvash - kw: Cornish - co: Corsican - cr: Cree - cy: Welsh - cs: Czech - da: Danish - de: German - dv: Divehi; Dhivehi; Maldivian - nl: Dutch; Flemish - dz: Dzongkha - el: Greek, Modern (1453-) - en: English - eo: Esperanto - et: Estonian - eu: Basque - ee: Ewe - fo: Faroese - fa: Persian - fj: Fijian - fi: Finnish - fr: French - fy: Western Frisian - ff: Fulah - ka: Georgian - de: German - gd: Gaelic; Scottish Gaelic - ga: Irish - gl: Galician - gv: Manx - el: Greek, Modern (1453-) - gn: Guarani - gu: Gujarati - ht: Haitian; Haitian Creole - ha: Hausa - ho: Hiri Motu - hr: Croatian - hu: Hungarian - hy: Armenian - ig: Igbo - is: Icelandic - io: Ido - ii: Sichuan Yi; Nuosu - iu: Inuktitut - ie: Interlingue; Occidental - ia: Interlingua (International Auxiliary Language Association) - id: Indonesian - ik: Inupiaq - is: Icelandic - it: Italian - jv: Javanese - ja: Japanese - kl: Kalaallisut; Greenlandic - kn: Kannada - ks: Kashmiri - ka: Georgian - kr: Kanuri - kk: Kazakh - km: Central Khmer - ki: Kikuyu; Gikuyu - rw: Kinyarwanda - ky: Kirghiz; Kyrgyz - kv: Komi - kg: Kongo - ko: Korean - kj: Kuanyama; Kwanyama - ku: Kurdish - lo: Lao - la: Latin - lv: Latvian - li: Limburgan; Limburger; limburgish - ln: Lingala - lt: Lithuanian - lb: Luxembourgish; Letzeburgesch - lu: Luba-Katanga - lg: Ganda - mk: Macedonian - mh: Marshallese - ml: Malayalam - mi: Maori - mr: Marathi - ms: Malay - mk: Macedonian - mg: Malagasy - mt: Maltese - mn: Mongolian - mi: Maori - ms: Malay - my: Burmese - na: Nauru - nv: Navajo; Navaho - nr: Ndebele, South; South Ndebele - nd: Ndebele, North; North Ndebele - ng: Ndonga - ne: Nepali - nl: Dutch; Flemish - nn: Norwegian Nynorsk; Nynorsk, Norwegian - nb: Bokmål, Norwegian; Norwegian Bokmål - no: Norwegian - ny: Chichewa; Chewa; Nyanja - oc: Occitan (post 1500) - oj: Ojibwa - or: Oriya - om: Oromo - os: Ossetian; Ossetic - pa: Panjabi; Punjabi - fa: Persian - pi: Pali - pl: Polish - pt: Portuguese - ps: Pushto; Pashto - qu: Quechua - rm: Romansh - ro: Romanian; Moldavian; Moldovan - rn: Rundi - ru: Russian - sg: Sango - sa: Sanskrit - si: Sinhala; Sinhalese - sk: Slovak - sl: Slovenian - se: Northern Sami - sm: Samoan - sn: Shona - sd: Sindhi - so: Somali - st: Sotho, Southern - es: Spanish; Castilian - sq: Albanian - sc: Sardinian - sr: Serbian - ss: Swati - su: Sundanese - sw: Swahili - sv: Swedish - ty: Tahitian - ta: Tamil - tt: Tatar - te: Telugu - tg: Tajik - tl: Tagalog - th: Thai - bo: Tibetan - ti: Tigrinya - to: Tonga (Tonga Islands) - tn: Tswana - ts: Tsonga - tk: Turkmen - tr: Turkish - tw: Twi - ug: Uighur; Uyghur - uk: Ukrainian - ur: Urdu - uz: Uzbek - ve: Venda - vi: Vietnamese - vo: Volapük - cy: Welsh - wa: Walloon - wo: Wolof - xh: Xhosa - yi: Yiddish - yo: Yoruba - za: Zhuang; Chuang - zh: Chinese - zu: Zulu |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'List', 'null'] | +
If multiple formats are available please specify. See application, audio, image, message, model, multipart, text, video, https://www.iana.org/assignments/media-types/media-types.xhtml Note: If your file format is not included in the current list of formats, please indicate other. If you are using the HOP you will be directed to a service desk page where you can request your additional format. If not please go to: https://metadata.atlassian.net/servicedesk/customer/portal/4 to request your format.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Format | +- If multiple formats are available, please specify. See application, audio, image, message, model, multipart, text, video, https://www.iana.org/assignments/media-types/media-types.xhtml. - Please enter one format type at a time and click Add New Field to add further keywords. - Note: If your file format is not included in the current list of formats, please indicate other. - Example: text/tab-separated-values, application/sql, text/csv, image/diacom-rle |
+False | +True | +["CommaSeparatedValues[{'anyOf': [{'pattern': '([^,]+)', 'type': 'string'}, {'type': 'null'}]}]", 'List', 'null'] | +
Examples:
+This section includes information about related datasets that may have previously been linked, as well as indicating if there is the opportunity to link to other datasets in the future. If a dataset has been enriched and/or derivations, scores and existing tools are available this section allows providers to indicate this to researchers.
+If applicable, please provide DOIs or links to datasets from which data in this dataset has been derived or calculated from.
+None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Persistent identifier of a dataset | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null'] | +
None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Title of a dataset | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null'] | +
None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Url of a dataset | ++ | False | +True | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
This relationship indicates that the dataset is a component or subset of a broader collection of related datasets. For example, clinical trial data for a specific drug may be part of a larger database of pharmaceutical research data. Complete only if the dataset is part of a group or family of datasets i.e. Hospital Episode Statistics has several constituents. If your dataset is not part of a group, please enter “NOT APPLICABLE” Example: Hospital Episodes Statistics datasets (A&E, APC, OP, AC MSDS).
+Examples:
+None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Persistent identifier of a dataset | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null'] | +
None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Title of a dataset | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null'] | +
None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Url of a dataset | ++ | False | +True | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
If applicable, please provide the DOI of other datasets that have previously been linked to this dataset and their availability. If no DOI is available, please provide the title of the datasets that can be linked.
+None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Persistent identifier of a dataset | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null'] | +
None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Title of a dataset | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null'] | +
None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Url of a dataset | ++ | False | +True | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Datasets that are similar to each other in some way, collect similar patients, regional equivalent etc.
+None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Persistent identifier of a dataset | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null'] | +
None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Title of a dataset | ++ | False | +True | +["OneHundredFiftyCharacters[{'maxLength': 150, 'minLength': 2, 'type': 'string'}]", 'null'] | +
None
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Url of a dataset | ++ | False | +True | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Please provide link to any active projects that are using the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Investigations | +- Please provide the website address(es) which document information related to active projects utilising the dataset. - Please split your existing list of citations into separate fields. - To add multiple entries, please click on '+' symbol to enter each separate website. - Example: https://dataloch.org/insights/projects-delivered/data-driven-innovation-multi-morbidity-report-partner-gps |
+True | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]"] | +
Please provide the URL of any analysis tools or models that have been created for this dataset and are available for further use. Multiple tools may be provided. Note: We encourage users to adopt a model along the lines of https://www.ga4gh.org/news/tool-registry-service-api-enabling-an-interoperable-library-of-genomics-analysis-tools/
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Tools | +- Please provide the URL of any analysis tools or models that have been created for this dataset and are available for further use. - Multiple tools may be provided. - Note: We encourage users to adopt a model along the lines of https://www.ga4gh.org/news/tool-registry-service-api-enabling-an-interoperable-library-of-genomics-analysis-tools/ |
+True | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]"] | +
DOIs for publications which describe the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Publication about the dataset | +- Please provide the DOIs for publications which describe the dataset. - Please split your existing list of citations into separate fields. - To add multiple entries, please click on '+' symbol to enter each separate citation. - Example: https://doi.org/10.1093/ije/dyab028 |
+True | +False | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]"] | +
Examples:
+DOIs for publications which use the dataset for analysis.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Publication using the dataset | +- Please provide the DOIs for publications which have used the dataset in their analysis. - Please split your existing list of citations into separate fields. - To add multiple entries, please click on '+' symbol to enter each separate citation. - Example: https://doi.org/10.1001/jamapediatrics.2016.3633 |
+True | +False | +["Doi[{'anyOf': [{'pattern': '^10.\\d{4,9}/[-._;()/:a-zA-Z0-9]+$', 'type': 'string'}, {'type': 'null'}]}]"] | +
Examples:
+This section provides an overview of observations of your dataset linked to specific points in time. Multiple observations about the dataset are encouraged to be provided, including multiple observations of the same property at different timepoints. At least one observation is required.
+Please select one of the following broad notes for your measured observation. Indicating whether the measured property is a recording of unique persons, events, findings or scans per modality.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Dataset volume measure | +- Persons: Unique persons recorded in the dataset - Events: Unique events such as procedures and prescriptions within the dataset -Findings: Unique findings included in the dataset such as diagnoses' -Number of scans per modality: Unique scans for a specified imaging method modality (e.g. 12 x-rays) |
+False | +True | +["StatisticalPopulationConstrainedV2['Person','Event','Findings','Number of scans per modality']"] | +
Examples:
+An integer value size of the measured property, such as ‘1000’ for 1000 people in the study or ‘87’ for 87 MRI scans in the dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured value | +An integer value size of the measured property, such as ‘1000’ for 1000 people in the study or ‘87’ for 87 MRI scans in the dataset. | +False | +True | +['int'] | +
If required, please provide additional details that help distinguish between similar measured properties within your dataset, for example this is useful when SNOMED CT terms do not provide sufficient detail to distinguish between parts of the dataset population. Limited to 500 characters.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Disambiguating description | +If required please provide additional details that help distinguish between similar measured properties within your dataset, for example this is useful when SNOMED CT terms do not provide sufficient detail to distinguish between parts of the dataset population. | +False | +False | +["AbstractText[{'anyOf': [{'maxLength': 500, 'minLength': 5, 'type': 'string'}, {'type': 'null'}]}]", 'null'] | +
Provide the date, or datetime that the observation was made. Multiple observations of the same property can be provided, for example an observation of cumulative COVID positive cases by specimen on the 1/1/2021 with a measuredValue of 2000000, and a second observation entry on 8/2/2021 recording a measuredValue of as 3100000.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Observation date | +Provide the date, or datetime that the observation was made. Multiple observations of the same property can be provided, for example an observation of cumulative COVID positive cases by specimen on the 1/1/2021 with a measuredValue of 2000000, and a second observation entry on 8/2/2021 recording a measuredValue of as 3100000. | +False | +True | +['date', 'datetime'] | +
Descriptive term for the observation property measured. For example, people, procedures, x-rays, or diagnosis of type 1 diabetes. This could also be a specific SNOMED CT term.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Measured property | +Descriptive term for the observation property measured. | +False | +True | +['MeasuredProperty[{}]'] | +
Descriptions of all tables and data elements that can be included in the dataset.
+Tables in the dataset
+The name of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table name | ++ | False | +True | +['str', 'null'] | +
A description of a table in a dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Table description | ++ | False | +False | +['str', 'null'] | +
A list of columns contained within a table in a dataset.
+The name of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column name | ++ | False | +True | +['Name[{}]'] | +
The data type of values in the column.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Data type | ++ | False | +True | +['str'] | +
A description of a column in a table.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Column description | ++ | False | +False | +['str', 'null'] | +
A True or False value, indicating if the field is sensitive or not.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Sensitive | ++ | False | +True | +['bool'] | +
Values in a dataset.
+Unique value in a column.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value name | ++ | False | +True | +['Name[{}]'] | +
A description of a unique value in a column.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value description | ++ | False | +False | +['str', 'null'] | +
The frequency of occurrance of a value in a column.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Value frequency | ++ | False | +False | +['int', 'null'] | +
Links to locations of information and or raw downloads of synthetic data associated with this dataset.
+| title | +guidance | +is_list | +required | +type | +
|---|---|---|---|---|
| Synthetic data web links | ++ | True | +False | +["Url[{'anyOf': [{'format': 'uri', 'minLength': 1, 'type': 'string'}, {'type': 'null'}]}]"] | +