UNDERSTANDING ONLINE REGISTRY FACILITATORS AND BARRIERS EXPERIENCED BY BLACK BRAIN HEALTH REGISTRY PARTICIPANTS: THE COMMUNITY ENGAGED DIGITAL ALZHEIMER’S RESEARCH (CEDAR) STUDY
M.T. Ashford, D. Zhu, J. Bride, E. McLean, A. Aaronson, C. Conti, C. Cypress, P. Griffin, R. Ross, T. Duncan, X. Deng, A. Ulbricht, J. Fockler, M.R. Camacho, D. Flenniken, D. Truran, S.R. Mackin, C. Hill, M.W. Weiner, D. Byrd, R.W. Turner II, H. Cham, M. Rivera Mindt, R.L. Nosheny
J Prev Alz Dis 2023;3(10):551-561
BACKGROUND: Failure of Alzheimer’s disease and related diseases (ADRD) research studies to include and engage Black participants is a major issue, which limits the impact and generalizability of research findings. Little is known about participation of Black adults in online ADRD-related research registries.
OBJECTIVES: As part of the Community Engaged Digital Alzheimer’s Research (CEDAR) Study, this study aims to increase our understanding of facilitators and barriers of Black adults to participating in ADRD-related online registries, as well as to understand their preferences for communication channels.
DESIGN, SETTING, PARTICIPANTS, MEASUREMENTS: We invited all Black participants enrolled in the Brain Health Registry (BHR) to complete a cross-sectional online survey. The survey consisted of rating scales and open-text questions asking about their attitudes towards brain health research, reasons for joining and continuing to participate in BHR, difficulties with participating, and preferences for modes of contact and website usage.
RESULTS: Of all invited Black BHR participants (N=3,636), 198 (5.5%) completed the survey. The mean age was 58.4 (SD=11.3), mean years of education were 16.3 (SD=2.4), and 85.5% identified as female. Reported facilitators for joining and continuing to participate in BHR were personal interest (e.g., learning more about own brain health) and altruism (e.g., helping research). Among additional registry features which could encourage return, receiving feedback or scores about BHR tasks was rated the highest. Of those who found BHR participation difficult (21%), the most frequent reason was time burden. The most preferred way of receiving study information was via email. Participants reported that the websites that they used the most were YouTube and Facebook.
DISCUSSION: The results of our study can inform the development of culturally-responsive registry features and engagement efforts to improve inclusion and participation of Black adults in online ADRD research. Providing participants with feedback about their registry performance and reducing the number of registry tasks are among the recommended strategies.
M.T. Ashford ; D. Zhu ; J. Bride ; E. McLean ; A. Aaronson ; C. Conti ; C. Cypress ; P. Griffin ; R. Ross ; T. Duncan ; X. Deng ; A. Ulbricht ; J. Fockler ; M.R. Camacho ; D. Flenniken ; D. Truran ; S.R. Mackin ; C. Hill ; M.W. Weiner ; D. Byrd ; R.W. Turner II ; H. Cham ; M. Rivera Mindt ; R.L. Nosheny (2023): Understanding Online Registry Facilitators and Barriers Experienced by Black Brain Health Registry Participants: The Community Engaged Digital Alzheimer’s Research (CEDAR) Study. The Journal of Prevention of Alzheimer’s Disease (JPAD). http://dx.doi.org/10.14283/jpad.2023.25