ELSI Dialogues: Participant engagement in longitudinal population studies/cohorts

Retaining several generations of participants in longitudinal cohorts and ensuring that the participants continuously contribute with new data and support data sharing is challenging.

Participants gradually drop out, do not respond to data collection requests, or simply lose interest in the study. Young people, disadvantaged socio-economic groups, and ethnic minorities are particularly difficult to retain for a long period of time.

At this workshop, the strategies of key European cohorts are presented and discussed, and experiences exchanged. Work conducted to map participant engagement strategies in European cohorts are also presented.

The workshop is jointly organised by BBMRI-ERIC and Biobank Norway.