The BEYONDD Pilot Study: A Decentralized Community-Engaged Research Framework for Multimodal Characterization of Neurodegenerative Risk in a Multi-Ethnic, Midlife Cohort with Subjective Cognitive or Behavioral Complaints
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Introduction
Alzheimer’s disease and related dementias (AD/ADRD) pathology begin decades before diagnosis, yet scalable risk detection infrastructures for midlife adults remain limited. The Biomarker Evaluation of Young Onset Dementia from Diverse Populations (BEYONDD; R56AG075744) pilot study was designed to address this gap through a decentralized, community-engaged research (CER) model for neurodegenerative risk detection in midlife adults with subjective cognitive or behavioral complaints (sCBC).
Methods
This cross-sectional pilot assessed the feasibility of CER-based digital recruitment and participant completion of remotely-acquired screening, cognitive, clinical, and phlebotomy assessments with support of Community Research Navigators (CRNs). Feasibility was evaluated using digital recruitment metrics, yield, retention, and geographic reach.
Results
Our approach generated 1.8+ million advertisement impressions, 161,100 clicks, and 4,089 web-registrants. 2,117 individuals completed the online screener, exceeding the prespecified screening goal by 141%. We enrolled a multi-ethnic, midlife cohort of 579 participants ( M age =51.6[6.5]; 75% female; 44% Latinx, 31% non-Latinx Black-American, and 26% all other race/ethnicities), exceeding the enrollment goal by 290%, and 476 participants completed the remote protocol (82% retention). Participants were recruited from 49 U.S. states, Puerto Rico, Australia, and Canada. CRN engagement was concentrated during study stage transitions.
Discussion
BEYONDD’s decentralized, CER-based screening infrastructure demonstrated wide geographic reach, strong early-stage engagement, and efficient recruitment among diverse midlife adults. These findings support the feasibility of scalable CER-based digital recruitment for decentralized early detection initiatives and AD/ADRD trials.
