Federated Human Data

31 May 2019 - 30 December 2021

Many countries in Europe have nascent personalised medicine programmes indicating a shift in human genomics from a predominantly research-driven activity to one funded through healthcare. This is evidenced by the declaration of many European countries to sequence and share transnationally at least 1 million genomes by 2022. As healthcare is subject to national laws, genetic data generated in this way is not likely to be shared as widely as research data. The ELIXIR Federated Human Data Community envisions to create a federated ecosystem of interoperable services that enables population scale genomic and biomolecular data to be accessible across international borders.

Current study will coordinate the delivery of FAIR compliant metadata standards, interfaces, and reference implementation to support the federated ELIXIR network of human data resources. The overall goal is to provide secure, standardized, documented and interoperable services under the framework of the European Genome-Phenome Archive (EGA). This includes a structured roadmap for ELIXIR Nodes to join the EGA federated network by providing the necessary technical, logistical, and training coordination across the network.


The study builds on earlier work in the ELIXIR-EXCELERATE, CORBEL and Tryggve projects. It is led by the European Genome-Phenome Archive (EGA, EMBL-EBI) to ensure alignment with the policies, legal agreements, and governance model for establishing the Federated EGA. Seventeen national ELIXIR Nodes are involved in this study among which ELIXIR Belgium (Yves Moreau).