Federated EGA
Federated EGA Vision Statement
The Federated EGA is the primary global resource for discovery and access of sensitive human omics and associated data consented for secondary use, through a network of national human data repositories to accelerate disease research and improve human health.
Over the last 10 years, most individual-level human omics data have been generated in the context of research consortia and shared via global repositories such as the European Genome-phenome Archive (EGA). Many countries now have emerging personalised medicine programmes which are generating data from national or regional initiatives. Thus, human genomics is undergoing a step change from being a research-driven activity to one funded through healthcare initiatives.
Genetic data generated in a healthcare context is subject to more stringent information governance than research data and often must comply with national legislation. To address this need, the Federated EGA provides a network of connected resources to enable transnational discovery of and access to human data for research while also respecting jurisdictional data protection regulations. By providing a solution to emerging challenges around secure and efficient management of human omics and associated data, the Federated EGA fosters data reuse, enables reproducibility, and accelerates biomedical research.
Overview
EGA is contributing the Federated EGA model, requirements and experiences to several communities and projects like GA4GH, ELIXIR Federated Human Data Implementation Study or ELIXIR Federated Human Data community.
Check out the Federated EGA Onboarding documentation!
Documentation
Title | Version | Description |
---|---|---|
Structure and Organisation | ||
Federated EGA Structure and Organisation | 1.1 | The structure of an Federated EGA network and service expectations. We organise the EGA into three types of nodes: Central EGA, Federated EGA nodes and EGA Community nodes; we outline the goals of such an organisation, and summarise the commitments and services provided by the nodes. |
Strategic Committee | ||
Federated EGA Strategic Committee | 1.1 | In the Federated EGA Strategic Committee terms of reference document we describe the purpose and objectives of the committee, which is to provide direction and strategic planning for the federated EGA project. The committee receives input from the EGA Strategic Committee and provides feedback for the EGA strategic roadmap. |
Operations Committee | ||
Federated EGA Operations Committee | 1.1 | The Federated EGA Operations Committee terms of reference describes the purpose and objectives of the operations committee, which is to review operational performance and coordinate technical implementation roadmaps of EGA Federated and Community nodes. The committee receives advice from the EGA Federated Strategic Committee, and provides operational reporting to the EGA Federated Strategic Committee |
Guidelines | ||
Node Operations guidelines | 2.0 | The Federated EGA Node Operations gives an overview of the operational areas which require resources in order to create a federated EGA node. The document is based on more than 10 years experience of establishing and operating the EBI and CRG Central EGA nodes. It provides a breakdown of the operational areas of responsibility into Helpdesk Services, Technical Operations, Software Development, and IT Infrastructure. |
Collaboration | ||
Federated EGA Collaboration Agreement | 1.0 | Nodes are welcome to make a copy of this current version of the CA to start its review with their legal teams and understand the responsibilities of joining FEGA. Nevertheless, this version (the one with a watermark) shall not be signed: the official version needs to be obtained from FEGA prior signing through its official channels. |