Findings from the Community Engaged Digital Alzheimer’s Research (CEDAR Study)
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Black/African American adults in the United States are about twice as likely as non-Latino/a/x white adults to develop Alzheimer’s disease and other forms of dementia.
Despite this undue burden on the Black community, many Alzheimer’s disease research studies fail to include and engage Black older adults. This is a major problem, because if research studies do not represent the general population, Alzheimer’s treatments are less likely to benefit everyone.
To help address this issue, a team led by researchers at the UCSF Brain Health Registry and Fordham University developed an online platform to increase Black older adults’ participation in brain health research. This initiative, called the Community Engaged Digital Alzheimer’s Research (CEDAR) study, was rooted in principles of Community Engaged Research, a framework that prioritizes equitable, collaborative relationships between academics and the community.
Brain Health Registry participants who self-identified as Black/African American received a series of email invitations to join CEDAR. After enrolling, participants were invited to consider serving on a Community-Science Partnership Board to guide the study, and were asked to complete online questionnaires and tests about their memory, thinking, health, and motivations for joining research.
- Out of about 3700 participants invited to join CEDAR, 349 (9%) enrolled.
- Compared to those who didn’t enroll, participants who joined CEDAR were older, had more years of education, were more likely to have a family history of Alzheimer’s disease, and were more likely to have completed all their Brain Health Registry questionnaires.
- The Community-Science Partnership Board consisted of 27 advisors:
- 19 CEDAR participants from across the United States
- 7 scientists from various academic institutions
- 1 marketing professional
- During quarterly Zoom meetings, advisors provided feedback on digital outreach strategies and materials, including social media posts, blogs, videos, and messaging toward the Black community.
- Advisors contributed to scientific manuscripts and provided strategies for sharing research findings with the public.
On the other CEDAR combined a community engaged research approach with online participant communication methods. This unique approach has the potential for widespread use in other research studies and clinical settings, and could be used to quickly engage more Black adults in online Alzheimer’s disease research.
Read more about the findings from this study here.