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D4.1 Mapping of available infrastructure services for Large Medical Cohorts

Year: 2025
Type: article
Abstract: The report, part of the INTEGRATE-LMedC project’s “Gap Analysis” pillar, maps the services, tools, and capacities that European and selected international infrastructures currently provide to large medical cohorts (LMedC) across the research-data lifecycle. Coordinated by ECRIN, the work combined a survey and follow-up interviews (February–April 2025) with 25 organisations, including research infrastructures, biobanks, omics centres, national hubs, European projects, and international consortia. Respondents reported on 14 service categories, revealing strong capacity in areas such as data services, training, and ethical/legal support, but more limited provision for cohort registration and operational support. The mapping exercise identifies five major service clusters: 1) Data Services, 2) Regulatory and Ethical Support, 3) Methodology and Design, 4) Biobanking and Omics, and 5) Operational Support and Coordination. In addition, it highlights six cross-cutting challenges: i) insecure long-term funding, ii) regulatory fragmentation, iii) interoperability gaps, iv) privacy constraints, v) workforce shortages, and vi) uneven digital infrastructure. To address these challenges, the report recommends promoting regulatory harmonisation, adopting data standards, mandating cohort registration, building GDPR-compliant privacy-preserving infrastructures, investing in sustainable funding, training, and secure EU storage, and improving coordination between service providers. The findings reveal a rich but fragmented landscape of infrastructure support for LMedC in Europe, underscoring the need for more coordinated, scalable, and comprehensive services to meet cohort research needs.
DOI: 10.5281/zenodo.17135850
Language: English
Open Access status: green
OpenAlex ID: W7081985208
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