EGA

EGA archives genetic and phenotypic data from biomedical research projects that are consented for specific approved uses but not for unrestricted public access, enabling regulated data sharing to support analyses of genotype–phenotype relationships and disease mechanisms.


Key Features:

  • Permanent Archiving: Ensures long-term preservation of genetic and phenotypic information from biomedical research projects.
  • Controlled Sharing: Provides access to datasets only to authorized users under strict conditions consistent with consented approved uses.
  • Strict Protocols: Management, storage, security, and dissemination of data follow rigorous protocols to maintain integrity and confidentiality.
  • Partnerships for Access Management: Collaborates with data-providing organizations to manage access rights and ensure only authorized retrieval of data.

Scientific Applications:

  • Human genetics research: Houses major reference data collections used to investigate genetic influences on phenotypes and disease mechanisms.
  • Biomedical research advancement: Provides controlled access to high-quality, consented datasets that support scientific collaboration and advances in biomedical research while safeguarding participant privacy.

Methodology:

Management, storage, security, and dissemination of data follow rigorous protocols to maintain data integrity and confidentiality, with access managed under authorization agreements with data-providing organizations.

Topics

Collections

Details

Maturity:
Mature
Cost:
Free of charge
Tool Type:
api, web application
Operating Systems:
Linux, Windows, Mac
Programming Languages:
Java
Added:
6/11/2015
Last Updated:
6/16/2020

Operations

Data Inputs & Outputs

Publications

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. The European Genome-phenome Archive of human data consented for biomedical research. Nature Genetics. 2015;47(7):692-695. doi:10.1038/ng.3312. PMID:26111507. PMCID:PMC5426533.

Documentation