The Federated EGA framework: supporting sensitive data management across the ELIXIR Nodes

1 January 2022 - 31 December 2024

The main goal for the ELIXIR Federated Human Data (FHD) Community is to position the Federated EGA (FEGA) framework as the core infrastructure driver to support human data sharing for research use-cases from nationally, European Commission, and/or internationally funded human health data sharing projects.

The Deliverables from this project will be incorporated by the FEGA governance framework to roadmap the maturity of the service, enabling FEGA to meet the needs of the sensitive human data management use cases from the ELIXIR Nodes.

To accomplish this goal, the project will act as a coordination hub to establish contact points with Nodes and projects to gather existing and emerging use-cases, map the engagement with the projects and Federated EGA, identify areas for collaboration on common goals (e.g. synthetic cohorts for infrastructure testing purposes; cohort harmonisation -  a huge task shared across many projects; and the identification and mapping of, shared use-cases), and act as a convening group to communicate the Federated EGA project status to the wider ELIXIR community.

This broad alignment role across Nodes and existing key projects will strategically place the Federated EGA infrastructure at the centre of European transnational sharing of sensitive human data.

The work is divided across three work-packages:

  • WP1 focuses on gathering existing and emerging use-cases for federated data sharing across (e.g. Node, EC, internationally funded) projects in order to identify opportunities for cross-project collaboration. 

  • WP2 focuses on gathering the detailed use cases for sensitive human data management from the ELIXIR Nodes, and to prioritise these use cases for development and support via the Federated EGA (FEGA) framework.gather the detailed use cases for sensitive human data management from the ELIXIR Nodes, and to prioritise these use cases for development and support via the Federated EGA (FEGA) framework.

  • WP3 will provide the overall management of this Implementation Study, responsible for tracking delivery, defining roles and responsibilities, and supporting meetings and presentations.

The present study is participated in by eighteen ELIXIR Nodes: ELIXIR Belgium (Frederik Coppens, Kim De Ruyck), ELIXIR Spain, ELIXIR Finland, ELIXIR Czech, ELIXIR Germany, ELIXIR Denmark, EMBL-EBI, ELIXIR Estonia, ELIXIR Italy, ELIXIR Hungary, ELIXIR France, ELIXIR Greece, ELIXIR Luxembourg, ELIXIR Norway, ELIXIR Sweden, ELIXIR Slovenia, ELIXIR Portugal. ELIXIR The Netherlands, and ELIXIR UK.