Rapid progress in information and biotechnologies offers the promise of better, personalized health strategies using rich phenotypic, environmental and molecular (omics) profiles of every individual. To capitalize on this great promise, key challenge is to relate these profiles to health and disease while accounting for high diversity in individuals, populations and environments. Both Europe and Canada have long-term investments in population-based prospective cohort studies providing essential longitudinal data. These data must be analysed in unison to reach statistical power, however, presently cohort data repositories are scattered, hard to search and integrate, and data protection and governance rules discourage central pooling. EUCAN-Connect will enable large-scale integrated cohort data analysis for personalized and preventive healthcare across EU and Canada. This will be based on an open, scalable data platform for cohorts, researchers and networks, incorporating FAIR principles (Findable, Accessible, Interoperable, Reusable) for optimal reuse of existing data, and building on maturing federated technologies, with sensitive data kept locally and only results being shared and integrated, in line with key ELSI and governance guidelines. Widespread uptake will be promoted via beyond state-of-the-art research in close collaboration with leading cohort networks, focused on early-life origins of cardio-metabolic, developmental, musculoskeletal and respiratory health and disease impacting human life course. To address challenges of sustainability and curation, we will deliver innovative solutions for distributed, low-cost data harvesting and preservation, community curation/harmonization, privacy protection, open source bioinformatics toolbox development, and international governance. EUCAN-Connect platform and collaborations will be coordinated through BBMRI-ERIC (EU) and Maelstrom Research (Canada) to sustain long-term benefits to science and citizens worldwide.

IMPROVE PRETERM aims to optimise the discovery and use of cost-effective, affordable and accessible interventions at birth and in early childhood to mitigate the adverse consequences of very preterm birth (VPT; 30) and analytic methods on a sustainable, privacy-preserving FAIR platform. IMPROVE PRETERM will consider a broad range of patient-valued outcomes, extending current assessment periods beyond infancy, to provide holistic, cost-effective solutions for high-quality CER. Outputs will improve the use of evidence-based care by clinicians and policymakers, reduce the preventable health burden and promote better quality of life for VPT individuals and their families.

SYNCHROS (SYNergies for Cohorts in Health: integrating the ROle of all Stakeholders) coordination and support action aims to establish a sustainable European strategy for the development of the next generation of integrated population, patient and clinical trial cohorts, thereby contributing to an international strategic agenda for enhanced coordination of cohorts globally. This will address the practical, ethical and legal, and the methodological challenge to optimising the exploitation of current and future cohort data, towards the development of stratified and personalised medicine as well as facilitating health policy. In order to achieve this objective, SYNCHROS will map the cohort landscape in Europe and large international initiatives, identify the best methods for integrating cohort data, identify solutions for addressing practical, ethical and legal challenges in integrating data across patient, clinical trial and population cohorts, and evaluate the use of emerging and new data collection technologies and types of data. Together with intensive stakeholder involvement (researchers, patients, funding bodies, clinicians, coordinators of previous harmonization and integration exercises), strategy briefs will be written and used to conduct stakeholder dialogues to generate consensus following a deliberative process and implementation science methods. We aim to make sustainable recommendations on standards to improve future sample, data collection and data sharing methods and disseminate this information so as to contribute to defining an international strategic agenda for better coordination of cohorts globally. SYNCHROS partners include a large range of expertise from epidemiology and clinical research to legal/ethical issues and anthropology, international organizations such as WHO and European infrastructures such as ECRIN.