The Community Engaged Digital Alzheimer’s Research (CEDAR) Study: A Digital Intervention to Increase Research Participation of Black American Participants in the Brain Health Registry

Background Although Black/African American older adults bear significant inequities in prevalence, incidence, and outcomes of Alzheimer’s disease and related dementias, they are profoundly under-included in Alzheimer’s Disease research. Community-Engaged Research (e.g., equitable community/ science...

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Published in:The journal of prevention of Alzheimer's disease 2023, Vol.10 (4), p.847-856
Main Authors: Mindt, M. R., Ashford, M. T., Zhu, D., Cham, H., Aaronson, A., Conti, C., Deng, X., Alaniz, R., Sorce, J., Cypress, C., Griffin, P., Flenniken, D., Camacho, M., Fockler, J., Truran, D., Mackin, R. S., Hill, C., Weiner, M. W., Byrd, D., Turner, R. W., Nosheny, Rachel L.
Format: Article
Language:English
Subjects:
Aged
Alzheimer Disease
Black or African American
Brain
Female
Geriatrics/Gerontology
Humans
Male
Medicine
Medicine & Public Health
Neurology
Original Research
Patient Participation
Registries
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Summary:Background Although Black/African American older adults bear significant inequities in prevalence, incidence, and outcomes of Alzheimer’s disease and related dementias, they are profoundly under-included in Alzheimer’s Disease research. Community-Engaged Research (e.g., equitable community/ science partnerships) is an evidence-based approach for improving engagement of underrepresented populations into Alzheimer’s Disease research, but has lacked scalability to the national level. As internet use among older adults from underrepresented populations continues to grow, internet-based research shows promise as a feasible, valid approach to engagement and longitudinal assessment. The Community Engaged Digital Alzheimer’s Research (CEDAR) study utilizes a community-engaged research approach to increase the engagement and research participation of Black/African American adults in the Brain Health Registry (BHR) and Alzheimer Disease clinical research. Objectives To describe the methods and evaluate the feasibility of the CEDAR culturally-informed digital platform within BHR. Design All Black/African American participants in BHR were invited to enroll in CEDAR and to consider serving on a newly convened Community-Scientific Partnership Board to guide the study. The community board guided the development a culturally-informed cadre of engagement materials and strategies to increase research participation. Engagement strategies included incentives for study task completion, culturally-informed communications (e.g., landing page, emails and social media), resources about brain health, and video and written testimonials by CEDAR participants. Setting BHR, an Internet-based registry and cohort. Participants BHR participants self-identifying as Black/African American were invited to enroll. All participants who signed an online informed consent document were enrolled. Measurements We report the number of participants invited, enrolled, completed tasks, and volunteered to join the community board. We compared the demographics, cognitive profile, and baseline BHR task completion rates between CEDAR participants and all those invited to join the study. RESULTS: Of 3738 invited, 349 (9.34%) enrolled in CEDAR. 134 (37% of CEDAR participants) volunteered to join the community board, of which 19 were selected for the community board. Compared to those invited, the CEDAR cohort had a higher percentage of female participants (84.5%) and a lower percentage of participants who id
ISSN:2274-5807
2426-0266
DOI:10.14283/jpad.2023.32