Community Engagement in Diverse Populations for Alzheimer's Disease Prevention Trials

Abstract

Background: Among the impediments to Alzheimer’s disease (AD) primary prevention trials is a general difficulty identifying large numbers of healthy individuals willing to participate in extended treatment studies. The individuals responding to studies typically do not include large numbers of African-Americans (AfAms), a group at high risk for AD but also historically reluctant to participate in medical research. Objective: The present study was designed to develop a research-ready registry of normal community volunteers, 55 years of age or older, who are willing to participate in AD prevention studies. A focus of this "Alzheimer's Disease Prevention Registry (ADPR)" was to engage AfAms in research. Methods: Project planning was coordinated through the Joseph and Kathleen Bryan ADRC African American Community Outreach Program, a trusted program established in 1995 to disseminate AD information to underserved AfAm communities across the state of North Carolina. The ADPR recruitment relied on established community partnerships and personal contacts through weekly events, such as health fairs and educational venues at medical centers, senior housing facilities, and churches. A key emphasis was on community ownership in medical research that advances local needs. Registration could be done either by completing response cards, by telephone, or through accessing a secured website. Participants were allowed to opt in or out of studies depending on their interest (e.g. imaging/biomarkers, pharmacological interventions, nonpharmacological interventions). Results: In the first 4 months of the registration effort, over 410 individuals have enrolled. Of these nearly 40% (n=163) are AfAms. The majority have expressed interest in participating in all types of studies (66%); whereas, a small group (17%) have specifically declined participation in pharmaceutical trials. Others have expressed specific interest in limited areas, such as imaging studies (3%) or nonpharmacological studies (14%). Conclusions: It is possible to quickly assemble research registries that target those most likely to participate in future prevention studies and also include large numbers of AfAms, typically underrepresented in research. If registries similar to our ADPR were implemented across other national AD centers, prevention studies could be facilely initiated, speeding the development of therapies in representative populations and avoiding the need of expensive, inefficient recruitment campaigns. Author Disclosure Information: K.A. Welsh-Bohmer, None; H.L. Edmonds, None; M.I. McCart, None; K.M. Hayden, None; H.R. Romero, None; J.N. Browndyke, None; L.P. Gwyther, None; J.R. Burke, None. Presentation Preference (Complete): Poster Topic (Complete): Prevention Learning Objectives (Complete): Verb: describe Learning Objective: : major impediments to primary prevention trials Verb: identify Learning Objective: : specific obstacles and barriers impeding participation of African Americans Verb: summarize Learning Objective: : procedures to engage community in a research ready registry for prevention studies