The European Genome-Phenome Archive (EGA) is a collaborative partnership between the European Bioinformatics Institute (EMBL-EBI) and the Centre for Genomic Regulation (CRG).

The EGA provides a service for the permanent archiving and distribution of personally identifiable genetic and phenotypic data resulting from biomedical research projects. Data at EGA was collected from individuals whose consent agreements authorise data release only for specific research use to bona fide researchers. Strict protocols govern how information is managed, stored, and distributed by the EGA project.

Why do we need the EGA?

Participants in medical or genetic research projects typically provide consent for their data to be used in research but not for open public distribution. These data require a secure archiving, processing, and disseminating service that respects the original informed consent agreements.  In recent years, governments worldwide have enacted data privacy protection laws and regulations to protect the rights of their citizens, further restricting how personal data is shared. In this environment, services for securely archiving and sharing sensitive human data for research are more important than ever. The EGA’s mission is to foster data reuse, enable reproducibility, and accelerate biomedical and translational research in line with the FAIR (Findable, Accessible, Interoperable, and Reusable) principles.

Studies archived in the EGA represent a variety of research fields (e.g. cancer, rare diseases, infectious diseases, common/chronic diseases), data types (e.g. genetic/genomic, phenotypic, clinical), and technologies (e.g. whole genome/exome sequencing, bulk, and single-cell RNA sequencing, DNA methylation-sensitive sequencing) from researchers around the world. The link to EGA’s latest scientific paper can be found here https://academic.oup.com/nar/article/50/D1/D980/6430505.