ReviewJournal of Alzheimer's disease : JAD2018
Patient Engagement: The Fundació ACE Framework for Improving Recruitment and Retention in Alzheimer's Disease Research.
Review in Journal of Alzheimer's disease : JAD, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 16 papers, 1 of them a synthesis that pooled it.
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
16 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.Health expectations : an international journal of public participation in health care and health policy · 2019Pooled it
- Recruitment and Screening Methods in Alzheimer's Disease Research: The FIT-AD Trial.The journals of gerontology. Series A, Biological sciences and medical sciences · 2022Trial
- Beyond Transgenic Mice: Emerging Models and Translational Strategies in Alzheimer's Disease.International journal of molecular sciences · 2025Review
- Patient and public involvement in basic and clinical psychiatric research: a scoping review of reviews.BMC psychiatry · 2025Article
- Recruitment of pre-dementia participants: main enrollment barriers in a longitudinal amyloid-PET study.Alzheimer's research & therapy · 2023Observational
- Alzheimer's disease diagnosis and management: Perspectives from around the world.Alzheimer's & dementia (Amsterdam, Netherlands) · 2022Article
- Co-creation of practical "how-to guides" for patient engagement in key phases of medicines development-from theory to implementation.Research involvement and engagement · 2021Article
- Perceptions about Research Participation among Individuals at Risk and Individuals with Premanifest Huntington's Disease: A Survey Conducted by the European Huntington Association.Journal of personalized medicine · 2021Article
- Identification of undiagnosed dementia cases using a web-based pre-screening tool: The MOPEAD project.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2021Article
- Predicting amyloid positivity in patients with mild cognitive impairment using a radiomics approach.Scientific reports · 2021Article
- Challenges, facilitators and barriers to screening study participants in early disease stages-experience from the MACUSTAR study.BMC medical research methodology · 2021Article
- BIOFACE: A Prospective Study of Risk Factors, Cognition, and Biomarkers in a Cohort of Individuals with Early-Onset Mild Cognitive Impairment. Study Rationale and Research Protocols.Journal of Alzheimer's disease : JAD · 2021Observational
- Prescreening for European Prevention of Alzheimer Dementia (EPAD) trial-ready cohort: impact of AD risk factors and recruitment settings.Alzheimer's research & therapy · 2020Article
- Involving research participants in a pan-European research initiative: the EPAD participant panel experience.Research involvement and engagement · 2020Article
- Plasmalogen deficiency and neuropathology in Alzheimer's disease: Causation or coincidence?Alzheimer's & dementia (New York, N. Y.) · 2019Review
- Quantifying Recruitment Source and Participant Communication Preferences for Alzheimer's Disease Prevention Research.The journal of prevention of Alzheimer's diseaseArticle
Corrections and comments
- Erratum issued
Authors and funding
14 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Alzheimer's disease (AD) research is at a critical time. The global society is increasingly aware of the frightening rate of growth of the human and financial burden caused by this condition and of the urgent need to halt its progression. Consequently, the scientific community holds great responsibility to quickly put in place and optimize the machinery necessary for testing new treatments or interventions. In this context demand for participants for AD research is at an all-time high. In this review, we will focus on a methodological factor that is increasingly recognized as a key factor that shapes trial populations and affects validity of results in clinical trials: patient engagement, recruitment, and retention. We outline specific problems relevant to patient engagement in AD including recruiting enough participants, difficulties in participant retention, ensuring the recruited sample is representative of the general AD population, the burden of screening failures, and new challenges related to recruiting in preclinical disease. To address the urgent need for more research studying the applicability and cost-effectiveness of different recruitment strategies across different settings and nationalities, we describe the Models of Patient Engagement for Alzheimer's Disease (MOPEAD) project, a public-private partnership promoted by the Innovative Medicine Initiative (IMI), which will provide a large multinational quantitative analysis comparing different innovative recruitment models. We also discuss strategies that address each problem and draw on the experience of Fundació ACE to argue that focusing resources on comprehensive AD centers that offer coordinated clinical and social care and participate in basic and clinical research, is an effective and efficient way of implementing many of the discussed strategies.
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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.