Strategies Associated with Retaining Participants in the Longitudinal National Alzheimer’s Coordinating Center Uniform Data Set Study

BACKGROUND: Best approaches for retaining research participants in Alzheimer’s disease cohort studies are understudied. OBJECTIVE: Using 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. METHODS: We 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. RESULTS: Among 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. CONCLUSION: In the setting of limited resources, specific retention strategies may be more valuable than others.