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Community Engagement in Diverse Populations for Alzheimer Disease Prevention Trials

Romero, Heather R. PhD*,†; Welsh-Bohmer, Kathleen A. PhD*; Gwyther, Lisa P. MSW*; Edmonds, Henry L. MEd*; Plassman, Brenda L. PhD*; Germain, Cassandra M. PhD*; McCart, Michelle BA*; Hayden, Kathleen M. PhD*; Pieper, Carl DrPH*; Roses, Allen D. MD, FRCP, [Hon]*,‡

Alzheimer Disease & Associated Disorders: July–September 2014 - Volume 28 - Issue 3 - p 269–274
doi: 10.1097/WAD.0000000000000029
Original Articles

The recruitment of asymptomatic volunteers has been identified as a critical factor that is delaying the development and validation of preventive therapies for Alzheimer disease (AD). Typical recruitment strategies involve the use of convenience samples or soliciting participation of older adults with a family history of AD from clinics and outreach efforts. However, high-risk groups, such as ethnic/racial minorities, are traditionally less likely to be recruited for AD prevention studies, thus limiting the ability to generalize findings for a significant proportion of the aging population. A community-engagement approach was used to create a registry of 2311 research-ready, healthy adult volunteers who reflect the ethnically diverse local community. Furthermore, the registry’s actual commitment to research was examined, through demonstrated participation rates in a clinical study. The approach had varying levels of success in establishing a large, diverse pool of individuals who are interested in participating in pharmacological prevention trials and meet the criteria for primary prevention research trials designed to delay the onset of AD. Our efforts suggest that entry criteria for the clinical trials need to be carefully considered to be inclusive of African Americans, and that sustained effort is needed to engage African Americans in pharmacological prevention approaches.

*Duke University Medical Center, Joseph and Kathleen Bryan Alzheimer’s Disease Research Center, Durham, NC

Zinfandel Pharmaceuticals Inc., Chapel Hill, NC

Department of Psychology, University of Notre Dame

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Supported by NIA grant: P30 AG028377, ADCC Genomic Medicine Approach to MCI and Dementia (Bryan ADRC); NIA grant: P30AG028377-04S1, Research Supplement to Promote Diversity in Health-related Research (H.R.R.); Zinfandel Pharmaceuticals Inc.

The authors declare no conflicts of interest.

Reprints: Heather R. Romero, PhD, Joseph and Kathleen Bryan Alzheimer’s Disease Research Center, 2200 W. Main Street, Suite A200, Durham, NC 27705 (e-mail: heather.romero@duke.edu).

Received March 21, 2013

Accepted February 3, 2014

© 2014 by Lippincott Williams & Wilkins.