Cognitive training and promoting a healthy lifestyle in isolated REM sleep behavior disorder: The randomized controlled trial CogTrAiL-RBD.
Authors: Ophey A, Röttgen S, Kufer K, Pauquet J, Scharfenberg D, Armbrust P, Kammerzell A, Knopf N, Kollath S, Sommer P, Doppler CEJ, Farrher E, Seger A, Shah NJ, Zopfs D, Reetz K, Fink GR, Sommerauer M, Kalbe E
Journal: Alzheimer's & dementia : the journal of the Alzheimer's Association
mental health
psychology
open access
Abstract
Effective recruitment strategies are essential for research on Alzheimer's disease (AD) and AD‐related dementias (ADRD). AD and ADRD constitute a U.S. public health crisis, and the burden of dementia falls disproportionally on several racial and ethnic groups, including Hispanic/Latino communities., , In South Texas, where the majority of the population is Hispanic, dementia risk is amplified by persistent poverty, neighborhood disadvantage, limited access to specialty care across urban–rural settings, and a high cardiometabolic burden., , , , In parts of the Texas border region, AD prevalence among adults ≥65 years may reach ≈13%–18%. The South Texas Alzheimer's Disease Research Center (STAC) was established to pair mature scientific platforms with settled and sustainable community trust, cultural competence, and broad access across this high‐need region. Despite the clear epidemiologic imperative to generate evidence applicable across the U.S., the populations most affected by AD/ADRD remain grossly underrepresented in the evidence base used to shape biomarkers, diagnostics, and therapeutics. AD/ADRD neuroimaging cohorts and drug trials in the United States report limited racial/ethnic heterogeneity, a disparity driven by restrictive eligibility criteria, study burden, and access barriers that tend to make it difficult for individuals with constrained resources or comorbidities to participate in research., , , Recruitment and retention challenges are longstanding in AD trials and cohorts. Reviews emphasize that past initiatives have been fragmented and insufficient, calling for stronger methodological standards and consistent measurement of engagement outcomes. The gaps in recruitment cannot be closed by simply doing “better recruitment” framed as one‐time outreach campaigns. Underrepresentation is produced by interacting determinants at multiple levels: community capacity and lived constraints; clinical and health‐system referral pathways; and research‐enterprise design choices (e.g., language accessibility, consent workflows, data systems, and return‐of‐results). Treating recruitment as a system change is, therefore, a scientific necessity. Successful recruitment and retention entail building durable, bidirectional infrastructure that lowers barriers, increases trust, and makes research participation a routine, easy option. Implementation science offers a lens for assessing recruitment using performance metrics beyond raw enrollment counts (e.g., evaluating acceptability, adoption, feasibility, fidelity, penetration, and sustainability of engagement efforts).