Abstract
Issue
Longitudinal cohort studies, including patient and population-based cohorts, are a crucial component of public health research. However, many cohorts worldwide face similar challenges: a lack of structural funding, fragmented support from institutions, new regulatory demands (legal, methodological, technical), and limited visibility and reuse of data that is available. In the Amsterdam region in the Netherlands, a platform was developed to resolve these issues collectively, by establishing the Amsterdam Cohort Hub (ACH).
Description of the problem
ACH (project period 2023-2028) supports researchers and cohort professionals of 25 large cohort studies (more than 1 million participants in total) with practical tools, expert guidance, and a unified approach to data access, governance, and FAIR data stewardship. The aim is to create a collaborative and sustainable research platform where data, knowledge, and innovation are available across cohorts, disciplines, and institutions. This is a model that is scalable: from a regional effort to a national effort, and even expansion to the international field.
Results
Since its establishment in 2023, ACH developed policy in four areas of action: infrastructure, cohort support, research and network. Amongst others, we created a data catalogue, implemented OMOP to increase data interoperability, developed a knowledge databank, improved legal procedures, created a manual for linkage with registry data, initiated reuse of data in multi-cohort studies and organized networking activities.
Lessons
ACH is an innovative model to collectively resolve issues experienced by cohort studies, with potential for international implementation. In the past few years, ACH successfully organized centralized cohort support and data are increasingly being used to conduct multi-cohort research on important public health issues. At the same time, data harmonization across cohorts proved to be complex and needs further long-term investments.
Key messages
• Cohort studies are supported to collectively resolve legal, ethical, technical and methodological issues in a changing public health research landscape with shifting regulations.
• Amsterdam Cohort Hub creates a shared infrastructure to make cohort data findable, accessible and interoperable so that they can be sustainably reused for public health research.