The BEYONDD Project: Preliminary Findings within a Community‐Based Sample
Eden V. Barragan, Hilary W. Heuer, Rachel L. Nosheny, Monica R. Camacho, Krista Navarra, Paul S. Aisen, Annalise Rahman‐Filipiak, J. Scott Roberts, Adeyinka Ajayi, Omobolanle Ayo, Se Jun Cho, Julia E. Culhane, Kaori Kubo Germano, Vanessa A. Guzman, Michelle Higuera

TL;DR
The BEYONDD project uses community-based strategies to study early-onset dementia in a diverse U.S. population, showing promising recruitment and preliminary results.
Contribution
A novel community-engaged research approach to recruit a more representative sample for early-onset dementia studies.
Findings
Over 1700 potential participants were recruited, with 881 completing the online screening survey.
Preliminary analyses show a high Aβ42/40 positivity rate (∼30%) and common lab abnormalities like high LDL-cholesterol (63%).
The study successfully shared results with 22 participants, either on-site or remotely.
Abstract
Early onset dementia (EOD) affects people at the peak of personal and professional responsibilities and economic productivity. Alzheimer's disease (AD) and Frontotemporal Dementia (FTD) are the most common EOD etiologies, but have not been studied in a sample representative of the general US population. Multiple barriers impede research participation for many groups, but community‐engaged research (CER) strategies to enhance recruitment may make research participation more accessible and convenient for all. BEYONDD is an NIH‐funded, community‐based study focused on understanding the etiology of EOD, uses CER strategies such as remote assessments and return of research results as tools for enhancing sample representativeness. Participants are recruited using social media and local in‐person CER strategies and screened via an online platform for eligibility (age 40‐64, with concerns…
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Taxonomy
TopicsDementia and Cognitive Impairment Research · Alzheimer's disease research and treatments · Mental Health and Patient Involvement
