Generation Scotland participant survey on data collection

Abstract

Background: Generation Scotland (GS) is a population and family-based study of genetic and environmental health determinants. Recruitment to the Scottish Family Health Study component of GS took place between 2006-2011. Participants were aged 18 or over and consented to genetic studies, linkage to health records and recontact. Several recontact exercises have been successfully conducted aimed at a) recruitment to embedded or partner studies and b) the collection of additional data. As the cohort matures in age, we were interested in surveying attitudes to potential new approaches to data collection and recruitment. Methods: A ten-question online survey was sent to those participants who provided an email address. Results: We report a high level of positive responses to encouraging relatives to participate, to remote data and sample collection and for research access to stored newborn dried blood spots. Conclusions: The majority of current and prospective GS participants are likely to respond positively to future requests for remote data and sample collection.