Mapping of Available Infrastructure Services for Large Medical Cohorts
In 'Mapping of Available Infrastructure Services for Large Medical Cohorts', which draws on a survey and follow-up interviews with 25 organisations, an analysis was conducted that identified five main service clusters.
- Data Services
- Regulatory and Ethical Support
- Methodology and Design
- Biobanking and OMICS
- Operational Support and Coordination
The results revealed both strengths and gaps. While most organisations offer strong data-related services, only a few provide support for cohort registration or day-to-day study operations. Some infrastructures act as generalists, covering several service clusters, while others specialise deeply in areas such as imaging, OMICS, or ELSI—though few deliver end-to-end support. To serve pan-European users effectively, greater synergy, harmonisation of practices, and alignment of legal requirements across the EEA are needed.
ECRIN contributed to the mapping European and selected international research infrastructures that support large medical cohorts. Partners compiled a comprehensive overview of available services, tools, and capacities spanning the entire research-data lifecycle, from study design and governance to long-term data use.
In addition, partners highlighted six cross-cutting challenges that currently hinder service provision for large medical cohorts:
- Reliance on short-term, project-based funding that threatens long-term cohort sustainability
- Fragmented and rapidly evolving regulatory frameworks (GDPR divergence, uneven EHDS readiness, national variations)
- Persistent interoperability gaps across domains and formats
- Privacy and ethical barriers that slow cross-border data sharing, even in federated models
- Shortage of data stewards and specialised staff
- Inequal access to digital infrastructure, storage, and secure computing resources
The mapping exercise covered a wide range of infrastructures, including:
- ESFRI/ERIC infrastructures (e.g. ECRIN, BBMRI, ELIXIR, EBRAINS, EIRENE)
- National cohort infrastructures (e.g. France-Cohortes, NFDI4Health)
- Multinational initiatives (e.g. SYNCHROS, ORCHESTRA, Maelstrom Research, IARC/WHO, the International Health Cohorts Consortium – IHCC)
- Biobanks (e.g. Estonian Biobank, UK Biobank)
Next steps include a gap analysis that will compare current services with user needs, a multi-stakeholder workshop planned before the end of November, and a literature review to support recommendations for strengthening infrastructure services for large medical cohorts.
