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Follow-Up Data Requests to Biobank Participants Ineffective, Study Finds

Recontacting people who previously participated in biobanks in order to collect additional information may not yield as much data as expected, indicating that such information should be gathered at the time of biobank enrollment, a study appearing this week in BMJ Open finds. Biobanks are being established across the world with the goal of linking biological measurements with extensive longitudinal health information, but most do not include an extensive in-person examination at recruitment. To examine the effectiveness of post-participation information gathering by biobanks, a team led by University of Helsinki researchers reached out to nearly 6,000 people who had participated in the FinnGen study — a research project combining genotype data generated from Finnish biobank samples and digital health record data — seeking cognitive, behavioral, and lifestyle information. Requests for the information were sent either online or via post. The researchers find while recontacting the biobank enrollees with a physical letter was more effective than through an online healthcare portal, overall participation in the follow-up was low, although the data collected were reliable. The study's authors speculate that returning some tangible incentive and/or relevant health information to participants might improve participation rates but suggest that information from biobank participants should be collected at the time of enrollment whenever possible