Optimising cohort data in Europe

2. Developing a catalogue of infrastructures that would allow institutions at the EU level to steer and structure a catalogue for recommended standards. This means establishing and maintaining a meta registry of larger (previous, ongoing and new) clinical and population cohort data collection initiatives/projects and maintain/ further develop repositories of cohort harmonisation initiatives such as Maelstrom Research, and the SYNCHROS Repository. The task includes a definition of the inclusion and exclusion criteria for data collections being registered. The aim is thus to identify the boundary conditions for a constant registration of data in cohort registries namely, (i) what kind of project should be registered in such registries and (ii) what kind of strategies should be used for registering initiatives. This means that we also need to determine the threshold of the amount of population data in these registries. 3. Encouraging PIs of relevant data collections to publish cohort profiles and - in case of changes or new data collections - cohort profile updates. These cohort profiles must cover at least the cohort population (number of participants, ages, gender), what has been measured (variables and definitions, metadata) and study designs. An example of a cohort profile update is the Trøndelag Health Study (HUNT study) (Åsvold et al., 2022). 4. Developing a widely usable and adjustable curriculum for students who are interested or foreseeably engaged in medical research, epidemiology and statistical analyses of cohort data. This curriculum should cover among others standards and de-facto standards for variables and metadata, metadata harmonisation, available software use and resources for support in these matters (e.g. a future “Institute for Optimising Multi study Integrative Cohort Research”). Such a curriculum should be applicable to the actors involved in cohort research (e.g. students of medicine, and health policy practitioners). 5.2.3. Pillar III: Inclusion - Initial Strategic Tasks According to our analysis (cf. Section 4), these strategic tasks aim to combine complementary outputs from intangible resources and specialised tangible resources. The aim of these tasks should be to: 1. Elaborate, organise and implement the personnel, organisational and technical structures and means for the sustainable periodic review, adjustments and update of the strategic tasks related to Pillar III, Inclusion. Task III-1 needs to include the

details of a sound, sustainable budgetary basis related to Pillar III. 2. Promote trust in research institutions and research in general:

y y Counterbalancing and identifying power structures in commercial and non commercial research institutions to (i) ensure transparency and (ii) distribute belief and trust back to research institutions (addressee: general public).