Brain health registry updates: An online longitudinal neuroscience platform

Remote, internet-based methods for recruitment, screening, and longitudinally assessing older adults have the potential to facilitate Alzheimer's disease (AD) clinical trials and observational studies. The Brain Health Registry (BHR) is an online registry that includes longitudinal assessments...

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Bibliographic Details
Published in:Alzheimer's & dementia 2023-11, Vol.19 (11), p.4935-4951
Main Authors: Weiner, Michael W, Aaronson, Anna, Eichenbaum, Joseph, Kwang, Winnie, Ashford, Miriam T, Gummadi, Shilpa, Santhakumar, Jessica, Camacho, Monica R, Flenniken, Derek, Fockler, Juliet, Truran-Sacrey, Diana, Ulbricht, Aaron, Mackin, R Scott, Nosheny, Rachel L
Format: Article
Language:English
Subjects:
Aged
Aging
Alzheimer Disease - diagnosis
Alzheimer Disease - prevention & control
Brain
Humans
Neuropsychological Tests
Patient Selection
Registries
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Summary:Remote, internet-based methods for recruitment, screening, and longitudinally assessing older adults have the potential to facilitate Alzheimer's disease (AD) clinical trials and observational studies. The Brain Health Registry (BHR) is an online registry that includes longitudinal assessments including self- and study partner-report questionnaires and neuropsychological tests. New initiatives aim to increase inclusion and engagement of commonly underincluded communities using digital, community-engaged research strategies. New features include multilingual support and biofluid collection capabilities. BHR includes > 100,000 participants. BHR has made over 259,000 referrals resulting in 25,997 participants enrolled in 30 aging and AD studies. In addition, 28,278 participants are coenrolled in BHR and other studies with data linkage among studies. Data have been shared with 28 investigators. Recent efforts have facilitated the enrollment and engagement of underincluded ethnocultural communities. The major advantages of the BHR approach are scalability and accessibility. Challenges include compliance, retention, cohort diversity, and generalizability. Brain Health Registry (BHR) is an online, longitudinal platform of > 100,000 members. BHR made > 259,000 referrals, which enrolled 25,997 participants in 32 studies. New efforts increased enrollment and engagement of underincluded communities in BHR. The major advantages of the BHR approach are scalability and accessibility. BHR provides a unique adjunct for clinical neuroscience research.
ISSN:1552-5260
1552-5279
1552-5279
DOI:10.1002/alz.13077