Recruitment of Older African Americans in Alzheimer’s Disease Clinical Trials Using a Community Education Approach

Abstract

Alzheimer’s disease and related dementias (ADRD) is two times more prevalent among compared to non-Hispanic Whites. Despite the higher prevalence of ADRD among older African Americans, recent estimates suggest research enrollment by those who identify as African American remains limited. The purpose of the study is to 1) explore how a culturally tailored community education program impacts clinical trial interest and enrollment in ADRD research studies and to 2) identify how applicable the African American community perceived the culturally tailored curriculum. Using a community-engaged research approach, we collaborated with predominately African American serving community-based organizations to support content development and delivery of Aging with Grace (AWG), a culturally tailored ADRD educational curriculum. A total of five AWG presentations were given to 66 attendees. Most attendees (67%) expressed interest in participating in clinical trials after attending AWG. Enrollment increased within an observational study (84%) and lifestyle prevention clinical trials (52%) from 2018 to 2019. Attendees (32%) also perceived an increase in ADRD knowledge from attending AWG and 89.1% believed more African Americans should participate in research. Our work demonstrates the effectiveness of a culturally tailored community education program to enhance knowledge, clinical trial interest, and recruitment into observational studies and lifestyle ADRD clinical trials among older African Americans. Education programs developed in partnership with the community can serve as bridge to research participation for underrepresented minorities in clinical research. Future studies should assess long-term retention of knowledge and research readiness.

Recruitment of a Diverse Community-based Older Adult Cohort for a Longitudinal Aging Study

“…In our experience, presentations about the study or various health topics generally had low turnout, in contrast to what others have reported 39 ; however, many community members were positively inclined to attend our social events. Usually, participants accepted the social invitations but sometimes brought along guests who might sign up.…”

Recruitment methods and yield rates for a multisite clinical trial exploring risk reduction for Alzheimer's disease (rrAD)

“…The St. Louis site was able to recruit a high percentage of African Americans using tailored messaging and collaboration with community organizations. Research suggests that successful recruitment, enrollment, and retention across racially and ethnically diverse individuals require tailored procedures to enhance success 28,29 . Long‐term institutional commitment to inclusion has helped to overcome known barriers to participation 30 .…”

“…Research suggests that successful recruitment, enrollment, and retention across racially and ethnically diverse individuals require tailored procedures to enhance success. 28 , 29 Long‐term institutional commitment to inclusion has helped to overcome known barriers to participation. 30 Unlike most 5 , the HABLE study successfully enrolled over 1700 older adult Hispanic/Latinx participants to explore health and the aging brain using a community‐based participatory research (CBPR) approach.…”

“… 31 This could include a regular presence at community events, including churches, community council/development committees, fairs, and other events using staff who are like the populations of interest in terms of race/ethnicity. This type of recruitment effort may help to increase the diversity of those who are aware of and interested in participating in research, 2 , 28 , 29 , 37 although such procedures were only reported by two rrAD sites. Nevertheless, the recruitment teams at these sites had the impression that these special efforts facilitated the recruitment of potential participants who have historically been underrepresented in clinical research.…”

Leveraging African American family connectors for Alzheimer's disease genomic studies

“…The team provided education about AD, as well as the importance of research and clinical trial participation, which gave family connectors the opportunity to make informed decisions about study participation. While recruiting AAs for genomic studies has been challenging, implementing innovative, community‐based, culturally relevant strategies in AA communities can increase AAs participation in AD research 26,29,37,40–46 …”