European Genome-phenome Archive (EGA) is a repository for human biomolecular and

phenotypic In genetics, the phenotype () is the set of observable characteristics or traits of an organism. The term covers the organism's morphology (physical form and structure), its developmental processes, its biochemical and physiological propert ...

data in the

United Kingdom The United Kingdom of Great Britain and Northern Ireland, commonly known as the United Kingdom (UK) or Britain, is a country in Northwestern Europe, off the coast of European mainland, the continental mainland. It comprises England, Scotlan ...

and

Spain Spain, or the Kingdom of Spain, is a country in Southern Europe, Southern and Western Europe with territories in North Africa. Featuring the Punta de Tarifa, southernmost point of continental Europe, it is the largest country in Southern Eur ...

. It involves the secure storage of all potentially identifiable

genetic data A genome is all the genetic information of an organism. It consists of nucleotide sequences of DNA (or RNA in RNA viruses). The nuclear genome includes protein-coding genes and non-coding genes, other functional regions of the genome such as ...

, phenotypic and clinical data generated by biomedical research programs. 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 The European Molecular Biology Laboratory (EMBL) is an intergovernmental organization dedicated to molecular biology research and is supported by 29 member states, two prospect member states, and one associate member state. EMBL was created in ...

’s

European Bioinformatics Institute The European Bioinformatics Institute (EMBL-EBI) is an intergovernmental organization (IGO) which, as part of the European Molecular Biology Laboratory (EMBL) family, focuses on research and services in bioinformatics. It is located on the Wel ...

(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 The Centre for Genomic Regulation (CRG, ''Centre de Regulació Genòmica'' in Catalan) is a biomedical and genomics research centre based in Barcelona. Most of its facilities and laboratories are located in the Barcelona Biomedical Research Par ...

(CRG) in

Barcelona Barcelona ( ; ; ) is a city on the northeastern coast of Spain. It is the capital and largest city of the autonomous community of Catalonia, as well as the second-most populous municipality of Spain. With a population of 1.6 million within c ...

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).

External links

References

Information technology organizations based in Europe Open-access archives Open data Medical databases {{website-stub Bibliographic databases and indexes