Theme: Data Deposition
Project objectives
Human data, especially genomic data, is increasingly being federated across borders and institutions, with many stakeholders participating in multinational and global biomedical and health data networks, fostering collaborations and partnerships. While such international efforts are essential for the compilation and reuse of data, regulatory constraints often hinder the movement of certain data beyond organisational or national boundaries. Centralised approaches such as the Central European Genome-Phenome Archive (CEGA) are valuable, but not all data can be centralised.
The Federated European Genome-phenome Archive network (FEGA) addresses this, with early work concentrated on local collection of data with central archiving of metadata. FHDportal aims to support both federated and central submission of metadata. It will do this by providing a reusable portal for gathering and storing metadata at a national level, and submitting required metadata centrally to enable discovery of datasets via the CEGA. FHDportal complements the existing system by providing a way to explore richer metadata (for example, including detailed information on specific datasets or local funding information), while enabling a core set of metadata to be queried centrally.
FHDportal will be deployed and tested on FEGA nodes, and should be of interest to the many other countries seeking to join FEGA. The need for FHDportal is based on experience during onboarding and in moving to production nodes. It will offer a common solution for local mobilisation of data and metadata, which can be adapted to local situations. During development, it will be tested on both new and well-established nodes using different technical platforms and infrastructures. The resulting software will be provided to the whole community, and will hopefully become part of the emerging toolkit for new FEGA nodes wishing to establish themselves, and to ensure their nodes meet local needs while bringing European scale benefits.
People
SIB leads Swiss FEGA (onboarding in progress). Mark Ibberson and Owen Appleton bring expertise in human data and service development as partners of the Swiss TRE which will host the FEGA service. Patrick Ruch will contribute to query and metadata mining of FHDportal as an established expert in the field. Michael Baudis (co-lead of Beacon protocol development and GA4GH Discovery work stream) will provide Beacon implementation and alignment to GA4GH data standards.
CSC hosts an established FEGA node providing extensive technical expertise in sensitive data service design and architecture. Riku Riski and Jaakko Leinonen will design and deliver testing results for the alpha version of the portal with the testing partners
Venkata Satagopam (UNILU) brings extensive experience in clinical and translational data curation, FAIRification, data integration, knowledge management and ML/AI analysis. UNILU will test the alpha version of the portal with metadata from different health use cases.
Tim Beck (UNOTT) is part of the Health Data Research UK (HDR UK) Federated Analytics infrastructure programme and lead for human data activities at the ELIXIR-UK Node. He will lead the testing and feedback of the portal with HDR UK use cases.
