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
Rivera Mindt, M.; Savin, M. J.; Guzman, V.; Arentoft, A.; Barragan, E.; Cubbellotti, S.; Heuer, H.; Kubo Germano, K.; Rosen, H.; Jun Cho, S.; Higuera, M.; Sotelo, M.; Ramirez, C.; Culhane, J.; Margolis, A.; Slaughter, A.; Calcetas, A.; Talavera, S.; Vincaludo, K.; DiBenedetto, J.; Ayo, O.; Cham, H.; Rabinovici, G. D.; Boxer, A. L.; Byrd, D. A.
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Introduction: Alzheimers 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 (Mage=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: BEYONDDs 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.
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