A national open-access research registry to improve recruitment to clinical studies

Kotting, Piers, Smith, Adam, O'Hare, Megan B, Giebel, Clarissa ORCID: 0000-0002-0746-0566, Mendis, Lakshini, Shaw, Clare, Shillito, Imogen and Rossor, Martin N (2021) A national open-access research registry to improve recruitment to clinical studies ALZHEIMERS & DEMENTIA-TRANSLATIONAL RESEARCH & CLINICAL INTERVENTIONS, 7 (1). e12221-. ISSN 2352-8737, 2352-8737

Text TRCI-D-21-00037_R1.pdf - Author Accepted Manuscript Download (1MB) | Preview

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.

Item Type:	Article
Uncontrolled Keywords:	Alzheimer's disease, clinical trial recruitment, consent-for-approach, consent-for-contact, dementia, online registry, public engagement, registries, registry, research participation, research recruitment
Divisions:	Faculty of Health & Life Sciences Faculty of Health & Life Sciences > Inst. Population Health
Depositing User:	Symplectic Admin
Date Deposited:	23 Sep 2021 08:52
Last Modified:	23 May 2026 06:18
DOI:	10.1002/trc2.12221
Related Websites:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3138015
Disclaimer:	The University of Liverpool is not responsible for content contained on other websites from links within repository metadata. Please contact us if you notice anything that appears incorrect or inappropriate.