HEALTHYBRAINS.ORG: FROM REGISTRY TO RANDOMIZATION
K. Zhong, J. Cummings
J Prev Alz Dis 2016;3(3):123-126
Healthbrains.org is an interactive digital platform designed to establish an online community-based registry with a well characterized population who are willing and ready to participate in clinical trials. It challenges the community to get involved in a brain-healthy life style to reduce the risk of brain disorders. Users can choose to browse the site anonymously, sign up for updates and news, or register to get a “brain checkup” by completing questionnaires on their health and family history, demographic data, and other relevant life style information. In return, the registrants will receive their individualized Brain Health Index (BHI), and a personalized brain health report with customized recommendations. The site strives to empower registrants and enhance the user experiences through an interactive dashboard which acts as an engagement and motivation tool.
The information provided by the registrants allows the site to identify individuals that are interested in and may be appropriate for trials. Of 7,142 users with data available for review, 71 % are women, 58 % are 55 years old or older, 31 % have a family history of dementia, and 42 % are concerned about their memory. Among 4,150 who completed the BHI, 1,389 finished the Cognitive Function Instrument (CFI) (33%). As of April 2016, 3,869 have opted in for clinical trials, out of that 931 resided in the Las Vegas area, where 38 individuals were prescreened and 4 were randomized for A4 clinical trials to the Lou Ruvo Center for Brain Health in Las Vegas. The site will contribute to the evolving understanding of using web-based approaches to information capture and clinical trial recruitment.
K. Zhong ; J. Cummings (2016): Healthybrains.org: From Registry to Randomization. The Journal of Prevention of Alzheimer’s Disease (JPAD). http://dx.doi.org/10.14283/jpad.2016.100