A national open-access research registry to improve recruitment to clinical studies.
Alzheimer's & dementia (New York, N. Y.)(2021)
Abstract
INTRODUCTION:Barriers to recruitment for dementia studies are well documented. As part of the UK government's Dementia 2020 strategy, a nationally consistent system to increase public engagement and participation in research was launched in February 2015.
METHODS:We describe the development of the "Join Dementia Research" registry, including evolution of policy, involvement of people with dementia in co-production, data requirements, governance, technology, and the impact on study recruitment and what factors may have contributed to the services success.
RESULTS:The UK-wide online, telephone, and postal service has registered 47,071 volunteers, with 33,139 people (67.9% of all volunteers) taking part in 378 studies, with 49,954 total study enrolments. This has taken place across 295 research sites, involved 1522 researchers, and resulted in 134 peer-reviewed publications.
DISCUSSION:Public registries of individuals interested in research, with user-provided data enabling basic phenotyping, are effective at increasing public engagement with research and removing barriers to study recruitment. Deeper pheno/genotyping could be undertaken to improve matching, but how and when that information is collected will be a key factor.
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Key words
Alzheimer's disease,clinical trial recruitment,consent-for-approach,consent-for-contact,dementia,online registry,public engagement,registries,registry,research participation,research recruitment
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