ArticleAlzheimer's & dementia (New York, N. Y.)2021
A national open-access research registry to improve recruitment to clinical studies.
Article in Alzheimer's & dementia (New York, N. Y.), 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
7 citing papers in PubMed.
- The Evolution of Cognitive Impairment and Wellbeing Research: A Bibliometric Analysis.Healthcare (Basel, Switzerland) · 2026Review
- Feasibility and acceptability of remote APOE-genotyping among research volunteers of an online recruitment registry (The Dutch Brain Research Registry).The journal of prevention of Alzheimer's disease · 2025Article
- Improving recruitment and retention of people with Parkinson's disease to clinical studies: A scoping review.Journal of Parkinson's disease · 2025Article
- The Comprehensive Resilience-building psychosocial Intervention (CREST) for people with dementia in the community: a feasibility and acceptability study.Pilot and feasibility studies · 2024Article
- Article
- Recruitment approaches and profiles of consenting family caregivers and people living with dementia: A recruitment study within a trial.Contemporary clinical trials communications · 2023Article
- A national open-access research registry to improve recruitment to clinical studies.Alzheimer's & dementia (New York, N. Y.) · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionBarriers 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.
methodsWe 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.
resultsThe 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.