Racially diverse participant registries to facilitate the recruitment of African Americans into presymptomatic Alzheimer's disease studies

Abstract

Introduction The Alzheimer's Disease Prevention Registry (ADPR) of the Joseph and Kathleen Bryan Alzheimer's Disease Research Center at Duke University has been successful in achieving a racially diverse and “research ready” cohort of cognitively healthy volunteers. Methods The ADPR is based on an infrastructure that includes: (1) an administrative leadership team; (2) a coordinating center; (3) an IT management team; (4) a community engagement team; and (5) collaborations with study partners across disciplines. Results The ADPR currently has more than 4677 members, 26% of whom are African American. The ADPR has supported 21 studies including 8 biomarker studies, 7 clinical trials, 4 cognitive neuroscience studies, and 2 studies assessing novel computerized measures. Discussion We describe our experiences establishing and maintaining a diverse ADPR as well as insights on recruitment strategies to increase the representation of African Americans in Alzheimer's disease studies.

Barriers and solutions to Alzheimer's disease clinical trial participation for Black Americans

“…This is done for the purpose of demonstrating investment in community well‐being as well as gaining a stronger understanding of community needs before initiating a research process. Research suggests developing relationships through organizations central to the community (included examples: community centers, churches, barber shops, and schools) are successful methods to begin engagement 33–34,45–46 . Second, site selection is also critical, as it makes clinical trials more visible and accessible to diverse populations 38,39,41,47 .…”

“…Failure to build diverse clinical trial staff teams erodes trust and decreases participation of non‐White participants in clinical trials 42,44 . Fourth, clinical trial teams must engage in cultural competency trainings to better understand the unique contexts of the communities being served 33,38,42,52–54 . Teams should also develop culturally competent educational materials for communities that fit the specific context of each population and address the questions, concerns, or information gaps that may exist 33–34,38,40,42–44,47,54,55 .…”

“…Fifth, community leaders and influencers are key partners. Gaining the buy‐in, support, and participation of these community members is critical in building awareness, acceptance, and maximum participation 33–34,38,40,43,52 . Finally, as community members are sacrificing valuable time and resources to participate, they should be supported and compensated throughout the process 34,41,56–57 .…”

Early-stage Alzheimer disease: getting trial-ready

“…The proof-of-concept trial has recently been completed and results will be presented within the next year. Similar efforts are underway at other local and national web-based registries 57 .…”

Digital culturally tailored marketing for enrolling Latino participants in a web‐based registry: Baseline metrics from the Brain Health Registry

“…16,27 In the United States, a variety of national and local ADRD-related research registries have been developed for efficient prescreening and referral to studies. 28,29 They differ in purpose, format, and target population, [30][31][32][33][34][35][36] but most underrepresent Latino adults. 32,33,35 Evidence about effective registry enrollment strategies for Latino individuals is lacking.…”