Brain Health Registry updates: An online longitudinal neuroscience platform.

INTRODUCTION: 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.

METHODS: 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 under-included communities using digital, community-engaged research strategies. New features include multilingual support and biofluid collection capabilities.

RESULTS: BHR includes >100,000 participants. BHR has made over 259,000 referrals resulting in 25,997 participants enrolled in 30 aging and AD studies. 28,278 participants are co-enrolled in BHR and other studies with data linkage between studies. Data has been shared with 28 investigators. Recent efforts have facilitated the enrollment and engagement of under-included ethnocultural communities.

DISCUSSION: Major advantages of the BHR approach are scalability and accessibility. Challenges include compliance, retention, cohort diversity, and generalizability. This article is protected by copyright. All rights reserved.