European Genome-phenome Archive

European Genome-phenome Archive (EGA) is a repository for human biomolecular and phenotypic data[1] in the United Kingdom and Spain.[2] [3] It involves the secure storage of all potentially identifiable genetic data, phenotypic and clinical data generated by biomedical research programs.[4]

European Genome-phenome Archive
ProducerEuropean Molecular Biology Laboratory-European Bioinformatics Institute, Centre for Genomic Regulation (United Kingdom and Spain)
LanguagesEnglish
Access
CostFree
Coverage
DisciplinesBiomedical sciences
Format coverageDatasets
Links
WebsiteEGA Official Portal

As of March 2022, it stores and harvest data regarding over 4,500 research studies from over 1,000 institutions worldwide.[2]

History

EGA was launched in 2008 by the European Molecular Biology Laboratory’s European Bioinformatics Institute (EMBL-EBI) to support the voluntary archiving and dissemination of human genomic data requiring secure storage and distribution only to authorized researchers in a manner that "respects the consent agreements signed by the study subjects." Later, the EGA has expanded its scope of collaboration with the Centre for Genomic Regulation (CRG) in Barcelona.[5]

Controlled access

It offers the essential security required to regulate access, safeguard patient confidentiality, and provide access to those researchers and clinicians authorized to view controlled access data. Nevertheless, decisions about data access are not made by the EGA but rather by the appropriate data access-granting organization (DAO).[6]

References
  1. Fernández-Orth D, Lloret-Villas A, De Argila JR (June 2019). "European Genome-Phenome Archive (EGA) - Granular Solutions for the Next 10 Years". 2019 IEEE 32nd International Symposium on Computer-Based Medical Systems (CBMS). pp. 4–6. doi:10.1109/CBMS.2019.00011. ISBN 978-1-7281-2286-1. S2CID 199490012.
  2. Morello F. "Working together towards a federated European Genome-phenome Archive for publishing and re-using sensitive research data". CSC. Retrieved 2022-09-21.
  3. Lappalainen I, Almeida-King J, Kumanduri V, Senf A, Spalding JD, Ur-Rehman S, et al. (July 2015). "The European Genome-phenome Archive of human data consented for biomedical research". Nature Genetics. 47 (7): 692–695. doi:10.1038/ng.3312. PMC 5426533. PMID 26111507.
  4. Freeberg MA, Fromont LA, D'Altri T, Romero AF, Ciges JI, Jene A, et al. (January 2022). "The European Genome-phenome Archive in 2021". Nucleic Acids Research. 50 (D1): D980–D987. doi:10.1093/nar/gkab1059. PMC 8728218. PMID 34791407.
  5. Lappalainen I, Almeida-King J, Kumanduri V, Senf A, Spalding JD, Ur-Rehman S, et al. (July 2015). "The European Genome-phenome Archive of human data consented for biomedical research". Nature Genetics. 47 (7): 692–695. doi:10.1038/ng.3312. PMC 5426533. PMID 26111507.
  6. "The European Genome-phenome Archive". www.re3data.org. Retrieved 2022-09-21.
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