Community engagement in diverse populations for Alzheimer disease prevention trials

• Published in: Alzheimer disease and associated disorders Vol. 28; no. 3; p. 269
• Main Authors: Romero, Heather R, Welsh-Bohmer, Kathleen A, Gwyther, Lisa P, Edmonds, Henry L, Plassman, Brenda L, Germain, Cassandra M, McCart, Michelle, Hayden, Kathleen M, Pieper, Carl, Roses, Allen D
• Format: Journal Article
• Language: English
• Published: United States 01.07.2014
• Subjects: Aged; Alzheimer Disease - prevention & control; Female; Humans; Male; Middle Aged; Patient Selection; Registries; Residence Characteristics
• ISSN: 1546-4156
• DOI: 10.1097/WAD.0000000000000029

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.