Deliverable 3.6: FAIRification of participating data resources

HEREDITARY's Work Package 3 develops a multimodal, federated analytics platform; Task 3.6 designs FAIRification workflows and 1+MG-aligned practices for consortium data, and D3.6 reports their first implementation between months 7 (July 2024) and 24 (December 2025). These workflows apply the FAIR Principles, which seek to make digital assets Findable, Accessible, Interoperable and Reusable, and align with the 1+MG Framework for secure, privacy-preserving, cross-border human sensitive data sharing and discovery.

A consortium-wide assessment combined surveys and bilateral meetings to identify datasets and governance constraints, leading to a tiered FAIRification strategy: Tier A (future FEGA-model implementation), Tier B (submission to the European Genome-phenome Archive) and Tier C (catalogue-only metadata exposure via HealthDCAT-AP and related services).

As a Tier B case study, RadboudUMC's BaCo inflammatory bowel disease cohort was prepared for EGA deposition by building ontology-backed data dictionaries, harmonising clinical and microbiome variables, and designing the linkage of human and non-human components across EGA, ENA and BioSamples. Legal review of the EGA Data Processing Agreement and pre-GDPR consent has now cleared the way for submission, with later re-structuring in the emerging FEGA metadata model foreseen.

For Tier C, Task 3.6 produced HealthDCAT-AP records and supporting Zenodo packages for the Healthy Brain Study and two ALS cohorts from UNIPD and UNITO, validated with SHACL and Metadata Quality Assessment tools and intended for publication via the European Health Information Portal and harvesting by data.europa.eu. Parallel efforts include ONTO's reusable FAIRification pipelines over LinkedLifeData Inventory resources, CNAG's genomic data quality and harmonisation toolchain, and KU Leuven's legal analysis of AI Act dataset-completeness requirements, which together strengthen both the technical and governance foundations for future Tier A FAIRification.