ArticleJournal of Alzheimer's disease : JAD2022
Strategies Associated with Retaining Participants in the Longitudinal National Alzheimer's Coordinating Center Uniform Data Set Study.
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 7 papers.
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The trial behind it
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Who cites it
7 citing papers in PubMed.
- Outreach, Recruitment and Engagement Cores of NIA-designated Alzheimer's Disease Research Centers: Current strategies and future directions.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Review
- Experiences of participant burden in an Alzheimer's disease research center longitudinal cohort.Journal of Alzheimer's disease : JAD · 2026Article
- Retention of American Indian and Alaska Native participants in the National Alzheimer's Coordinating Center Uniform Data Set.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- Selection Bias in Health Research: Quantifying, Eliminating, or Exacerbating Health Disparities?Current epidemiology reports · 2024Article
- Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- Under-Diagnosis of Dementia with Lewy Bodies in Individuals Racialized as Black: Hypotheses Regarding Potential Contributors.Journal of Alzheimer's disease : JAD · 2024Review
- Impact of study partner replacement in a mild cognitive impairment clinical trial.Alzheimer's & dementia (New York, N. Y.)Article
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
backgroundBest approaches for retaining research participants in Alzheimer's disease cohort studies are understudied.
objectiveUsing data from the National Alzheimer's Coordinating Center Uniform Data Set, we evaluated the associations of unique strategies with participant retention across Alzheimer's Disease Research Centers and explored potential effect modification by race, ethnicity and diagnostic group.
methodsWe examined retention at the first follow-up visit among participants enrolled during 2015-2017. Structured surveys ascertained 95 retention tactics among 12 strategies. Strategy-specific summary scores were created based on the number of implemented tactics for each strategy and grouped into tertiles. Generalized estimating equations were constructed to evaluate associations between strategy scores and the odds of retention, controlling for age, sex, education, study partner type, marital status, visit length, battery length, diagnostic group, race and ethnicity. Separate models were stratified by race, ethnicity and diagnostic group. Effect modification was formally tested with interaction terms.
resultsAmong 5,715 total participants enrolled, 4,515 were Non-Hispanic White (79%), 335 were Hispanic/Latino (6%), 651 were Non-Hispanic Black (11%), and 214 were Non-Hispanic Asian (4%). Compared to the lowest tertile of scores, the highest tertile of scores involving improvement in study personnel and communication of study requirements and details were associated with 61% higher odds of retention in fully adjusted models (adjusted Odds Ratios [aOR] = 1.61, 95% Confidence Interval [CI] = 1.05-2.47 and aOR = 1.55, 95% CI = 1.03-2.35, respectively). We did not find evidence for effect modification.
conclusionIn the setting of limited resources, specific retention strategies may be more valuable than others.
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