INTEGRATE-LMedC
Concept development for a research infrastructure to manage, integrate and sustain large medical cohort studiesFunding programme: Horizon Europe(N 101131809)
Budget: €3M
Coordinator: BBMRI-ERIC
Duration: 3 years (January 2024 - December 2026)
The INTEGRATE-LMedC project aims to develop a new concept to guide and support decision-making for the next-generation research infrastructure (RI) to facilitate efficient utilization and harmonization of large medical cohorts (LMedC), and to accelerate scientific and medical breakthroughs in Europe and beyond.
This endeavor builds on the close collaboration between 11 highly interdisciplinary partners including established ERIC / ESFRI infrastructures such as BBMRI, ECRIN, EIRENE and EBRAINS with unique expertise in conceptualizing and implementing European RIs. The partners will generate a gap analysis to identify what is missing of cohort data and samples, RI tools and services, quality measures, governance models, user needs and the barriers for efficient utilization of these cohorts and existing RI, including ethical and legal frameworks.
To identify IT technologies and architecture for suitable data stewardship and long-term availability of European RIs, the partners will prepare a feasibility study for federated data analysis of LMedC. The feasibility study will be based on two examples of use-cases: one stroke case using data from medical health registries and one case using data from longitudinal population-based studies with different technical, legal, and ethical challenges. To ensure availability of data and samples related to existing and future LMedC studies and their re-use for secondary research, the partners will develop a concept outline including a governance plan and guiding principles for data access policies and data protection policy, whilst considering the FAIR principles and ELSI issues.
An overarching RI concept to manage, integrate, and sustain LMedC studies will be developed, including an initial financial and operational plan for the implementation of the new RI outlining new services and access opportunities for the research community.
ECRIN's role in INTEGRATE LMedC
ECRIN’s main role is contributing to identify relevant large medical cohorts to build on” and leading work on the current European RI-landscape - State-of the-art. The latter is tasked with providing:
A mapping of existing infrastructure resources and capacities at national, European and international levels to support large medical cohorts.
A mapping of users' needs in terms of infrastructure services to cohorts.
A gap analysis in the European landscape.
