Brain health registry updates: An online longitudinal neuroscience platform

Abstract

IntroductionRemote, 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.MethodsThe 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.ResultsBHR 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.DiscussionThe major advantages of the BHR approach are scalability and accessibility. Challenges include compliance, retention, cohort diversity, and generalizability.Highlights 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.

Evaluation of the Electronic Clinical Dementia Rating for Dementia Screening

“…These rates are substantially higher than those of other BHR surveys. 9 Still, the drop-off from 3565 study invitations to 288 individuals enrolled (8% of those invited) suggests that there may be study selection biases and emphasizes the need for caution regarding CDR scalability in other settings.…”

“…Participants and study partners completed the eCDR in-clinic at their baseline visit without assistance and then were instructed to complete the eCDR remotely, through the BHR online portal, within 2 weeks of the initial in-clinic administration (eAppendix 1 in Supplement 1). The mean (SD) time to complete the eCDR was 12.0 (3.4) minutes for participants and 16.0 (2.1) minutes for study partners.…”

“…[3][4][5][6][7] Remote, digital assessments are a promising approach, with evidence accumulating of their feasibility and validity. [8][9][10][11][12] The Clinical Dementia Rating (CDR) has been adopted worldwide as the standard benchmark for staging dementia. It assesses cognitive and functional decline across multiple, clinically relevant domains (ie, boxes): memory, orientation, judgment and problem solving, community affairs, home and hobbies, and personal care.…”

“…Accurate, reliable, and efficient strategies for screening and assessment are needed . Remote, digital assessments are a promising approach, with evidence accumulating of their feasibility and validity …”

Participant completion of longitudinal assessments in an online cognitive aging registry: The role of medical conditions

“…[3][4][5] In the ADRD field, several registries exist that differ in terms of reach (e.g., local vs national), population of interest, and format. [6][7][8][9][10][11][12][13][14][15] One of the priorities outlined in the "National Strategy for Recruitment and Participation in Alzheimer's Disease Clinical Research" is the assessment of registry performance. 16 Registry performance metrics include but are not limited to, registry enrollment, registry engagement (e.g., baseline and longitudinal assessment completion), and referral success to other studies.…”