A cohort represents a group of people followed over time. In cohort studies, medical, health, behavioural and contextual information is collected systematically. Data may be obtained e.g. from population surveys, clinical studies or medical treatments and interventions. Biological material may be stored in Biobanks.
The coverage of data is usually defined to answer specific research questions. Studies are conducted by different teams of researchers of different institutions. Accordingly, the definition of variables, measures, classifications, the comprehensiveness and quality of data differs between different cohorts.
The relevance and statistical reliability of findings depend both on the size of the cohorts and the quality of the data. Often results are not transferable to other populations or regions. Harmonising data over several cohorts, however, can greatly extend the significance of the results.
In particular, research on rare diseases, or research supporting personalised medicine, requires large cohorts in order to find a statistically representative number of individuals who share rare characteristics.
We interact with relevant initiatives worldwide. The results of our work, e.g. from mapping the cohort study landscape, compilations of legal and ethical requirements and methodological concepts, will be shared and translated into strategy briefs to facilitate stakeholder dialogues. We also aim to make sustainable recommendations on standards to improve the compatibility of future data collection, e.g. for data sharing methods towards an international strategic agenda to improve the coordination of cohorts globally.
Expected results are seen as an essential precondition for the development of stratified and personalized medicine and more efficient health policies.
Key stakeholders have initiated the project and leading representatives are involved in the project via a scientific advisory board and the ethics committee. The broader community of interested stakeholders is invited to get involved and to share results and comment via various communication channels such as email, blogs, Twitter and LinkedIn – all accessible via our website www.synchros.eu.