ArticleJournal of Alzheimer's disease : JAD2022
Retaining Participants in Longitudinal Studies of Alzheimer's Disease.
Article in Journal of Alzheimer's disease : JAD, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.
What it found
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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
19 citing papers in PubMed, 26 citations in OpenAlex.
- The impact of learning about financial compensation on enrollment in Alzheimer's disease longitudinal research.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Trial
- Research satisfaction among participants in a preclinical Alzheimer's disease trial.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Article
- Engagement of understudied populations as community change: The South Texas ADRC model.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Article
- Pathways to participation - a scoping review outlining barriers and enablers to participation in dementia research.The journal of prevention of Alzheimer's disease · 2026Article
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- Supporting frontline staff in frontotemporal degeneration research.Frontiers in neurology · 2026Article
- Experiences of participant burden in an Alzheimer's disease research center longitudinal cohort.Journal of Alzheimer's disease : JAD · 2026Article
- A Scoping Review on Conversational Memory and Characteristics of Conversations in Alzheimer's Disease.Journal of speech, language, and hearing research : JSLHR · 2025Article
- Study partners' views on remuneration in longitudinal Alzheimer's disease research.Alzheimer's & dementia. Behavior & socioeconomics of aging · 2025Article
- Ten simple rules for research with humans.PLoS computational biology · 2025Article
- Return of research results across the Alzheimer's Disease Research Centers network.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- A novel model for retinal imaging in the diagnosis of Alzheimer's disease.NPJ digital medicine · 2025Article
- Public attitudes towards personal health data sharing in long-term epidemiological research: a Citizen Science approach in the KORA study.BMC public health · 2024Article
- Dominantly Inherited Alzheimer Network Trials Unit (DIAN-TU): Trial Satisfaction and Attitudes towards Future Clinical Trials.The journal of prevention of Alzheimer's disease · 2024Article
- Retention of Study Partners in Longitudinal Studies of Alzheimer Disease.Journal of Alzheimer's disease : JAD · 2023Article
- Communicating Alzheimer's biomarker results to cognitively unimpaired research participants: Satisfaction, utility, and impact on research attitudes.Alzheimer's & dementia (New York, N. Y.)Article
- Impact of study partner replacement in a mild cognitive impairment clinical trial.Alzheimer's & dementia (New York, N. Y.)Article
- Potential of low-field MRI for increasing participation of Filipino Americans and underrepresented populations in Alzheimer's and dementia research.Alzheimer's & dementia (New York, N. Y.)Article
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 at 4 institutions in 1 country.
Funding
Abstract
backgroundRetention of study participants is essential to advancing Alzheimer's disease (AD) research and developing therapeutic interventions. However, recent multi-year AD studies have lost 10% to 54% of participants.
objectiveWe surveyed a random sample of 443 participants (Clinical Dementia Rating [CDR]≤1) at four Alzheimer Disease Research Centers to elucidate perceived facilitators and barriers to continued participation in longitudinal AD research.
methodsReasons for participation were characterized with factor analysis. Effects of perceived fulfillment of one's own goals and complaints on attendance and likelihood of dropout were estimated with logistic regression models. Open-ended responses suggesting study improvements were analyzed with a Latent Dirichlet Allocation topic model.
resultsFactor analyses revealed two categories, personal benefit and altruism, as drivers of continued participation. Participants with cognitive impairment (CDR > 0) emphasized personal benefits more than societal benefits. Participants with higher trust in medical researchers were more likely to emphasize broader social benefits. A minority endorsed any complaints. Higher perceived fulfillment of one's own goals and fewer complaints were related to higher attendance and lower likelihood of dropout. Facilitators included access to medical center support and/or future treatment, learning about AD and memory concerns, and enjoying time with staff. Participants' suggestions emphasized more feedback about individual test results and AD research.
conclusionThe results confirmed previously identified facilitators and barriers. Two new areas, improved communication about individual test results and greater feedback about AD research, emerged as the primary factors to improve participation.
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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.