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- Human data for research can be accessed from various sources such as - medical records, quality registries, and research databases. If the - research involves sensitive personal data (definition available here), - the project must be approved by the Swedish Ethical Review Authority. - This requirement applies even if the sensitive personal data is - pseudonymised. Additionally, all necessary legal measures must be in - place before transferring data from the agency or organisation providing - the source data. Procedures for requesting and disclosing data vary - between different authorities and organisations. + Human data for research can be accessed from several sources such as: + medical records, quality registries, research databases, etc. If + sensitive personal data (definition) will be used, the research project must be approved by + the Swedish Ethical Review Authority. This applies even if all the + sensitive personal data being processed is pseudonymised. Moreover, + necessary legal measures must be in place before the data can be + transferred from the agency or organisation that provides the source + data. Exactly how the procedures for requesting data for research and + how the data is disclosed differ between various authorities or + organisations. +
{/* The first heading */}{textBar}
Repositories and data sources in life science
+A comprehensive list of quality registers in Sweden
+KI Adaptive Immune Receptor Gene Variant Atlas
+An overview of accessing clinical data in Sweden, including patient and medical records, and quality registers.
+ + + {/* RAGnar Card with "Beta coming soon" Badge */} +A retrieval-augmented generation (RAG) AI tool for precision medicine, initially drawing on PubMed papers to answer questions with referenced sources.
+2024-10-03
+An adaptive immune receptor gene variant atlas hosting IG heavy chain alleles from 2,485 individuals, in collaboration with Gunilla Karlsson Hedestam's research group at Karolinska Institutet.
+2024-09-20
+Explore Swedish quality registers, filterable by organisation, category, or keywords. These registers support continuous healthcare improvement and serve as key resources for development and research.
+2024-09-20
+Developed by the Data Science Node in Precision Medicine and Diagnostics and operated by the SciLifeLab Data Centre.
+