European Genome-phenome Archive explained
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]
As of March 2022, it stores and harvest data regarding over 4,500 research studies from over 1,000 institutions worldwide.
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]
Notes and References
- Book: Fernández-Orth D, Lloret-Villas A, De Argila JR . 2019 IEEE 32nd International Symposium on Computer-Based Medical Systems (CBMS) . European Genome-Phenome Archive (EGA) - Granular Solutions for the Next 10 Years . June 2019 . https://ieeexplore.ieee.org/document/8787508 . 4–6 . 10.1109/CBMS.2019.00011. 978-1-7281-2286-1 . 199490012 .
- Web site: Morello F. Working together towards a federated European Genome-phenome Archive for publishing and re-using sensitive research data . CSC . 2022-09-21 .
- Lappalainen I, Almeida-King J, Kumanduri V, Senf A, Spalding JD, Ur-Rehman S, Saunders G, Kandasamy J, Caccamo M, Leinonen R, Vaughan B, Laurent T, Rowland F, Marin-Garcia P, Barker J, Jokinen P, Torres AC, de Argila JR, Llobet OM, Medina I, Puy MS, Alberich M, de la Torre S, Navarro A, Paschall J, Flicek P . 6 . The European Genome-phenome Archive of human data consented for biomedical research . Nature Genetics . 47 . 7 . 692–695 . July 2015 . 26111507 . 10.1038/ng.3312 . 5426533 .
- Freeberg MA, Fromont LA, D'Altri T, Romero AF, Ciges JI, Jene A, Kerry G, Moldes M, Ariosa R, Bahena S, Barrowdale D, Barbero MC, Fernandez-Orth D, Garcia-Linares C, Garcia-Rios E, Haziza F, Juhasz B, Llobet OM, Milla G, Mohan A, Rueda M, Sankar A, Shaju D, Shimpi A, Singh B, Thomas C, de la Torre S, Uyan U, Vasallo C, Flicek P, Guigo R, Navarro A, Parkinson H, Keane T, Rambla J . 6 . The European Genome-phenome Archive in 2021 . Nucleic Acids Research . 50 . D1 . D980–D987 . January 2022 . 34791407 . 8728218 . 10.1093/nar/gkab1059 .
- Lappalainen I, Almeida-King J, Kumanduri V, Senf A, Spalding JD, Ur-Rehman S, Saunders G, Kandasamy J, Caccamo M, Leinonen R, Vaughan B, Laurent T, Rowland F, Marin-Garcia P, Barker J, Jokinen P, Torres AC, de Argila JR, Llobet OM, Medina I, Puy MS, Alberich M, de la Torre S, Navarro A, Paschall J, Flicek P . 6 . The European Genome-phenome Archive of human data consented for biomedical research . Nature Genetics . 47 . 7 . 692–695 . July 2015 . 26111507 . 10.1038/ng.3312 . 5426533 .
- Web site: The European Genome-phenome Archive . 2022-09-21 . www.re3data.org.
