Kotting, P;
Smith, A;
O'Hare, MB;
Giebel, C;
Mendis, L;
Shaw, C;
Shillito, I;
(2021)
A national open-access research registry to improve recruitment to clinical studies.
Alzheimer's & Dementia: Translational Research & Clinical Interventions
, 7
(1)
, Article e12221. 10.1002/trc2.12221.
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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.
| Type: | Article |
|---|---|
| Title: | A national open-access research registry to improve recruitment to clinical studies |
| Location: | United States |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1002/trc2.12221 |
| Publisher version: | https://doi.org/10.1002/trc2.12221 |
| Language: | English |
| Additional information: | © 2021 The Authors. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring published by Wiley Periodicals, LLC on behalf of Alzheimer's Association. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. |
| Keywords: | Alzheimer's disease, clinical trial recruitment, consent‐for‐approach, consent‐for‐contact, dementia, online registry, public engagement, registries, registry, research participation, research recruitment |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Neurodegenerative Diseases |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10140868 |
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