Recruitment Innovations to Enhance Diversity in AD Research

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ABSTRACT Despite experiencing Alzheimer’s-related health problems at a disproportionate rate, African Americans are consistently and severely underrepresented in Alzheimer’s disease and related disorders (ADRD) research projects. Insufficient enrollment of African Americans in this line of research is a nationally-recognized problem. This is highly concerning not only because of the need for unbiased, representative samples in basic science and clinical research, but also because involving persons from underrepresented minority groups is crucial to advancing our understanding of, and ultimately combating, health disparities. In response to PAR-15- 349 “Health Disparities and Alzheimer’s Disease”, we propose to develop and evaluate a novel strategy that uses a storytelling campaign to enhance recruitment of African American adults into research at the University of Pittsburgh Alzheimer Disease Research Center. In Specific Aim 1, we will build on our promising pilot work to refine and evaluate community members’ acceptance of a storytelling strategy for communicating Alzheimer’s-related research participation experiences of African Americans in mid and late life. The storytelling strategy will highlight African Americans’ research participation narratives, as derived from a series of ethnographic interviews and told using short videos. In Specific Aim 2, we will evaluate the effect of this storytelling strategy on recruitment of African Americans into ADRD research. Videos developed in Aim 1 will be incorporated into all existing ADRC recruitment efforts, ranging from community events to social media strategies. The primary outcome for Aim 2 will be the proportion of African Americans recruited to the ADRC Clinical Core over an 18 month period, with the preceding 18 month period serving as the comparator. Specific Aim 3 will use path analysis modeling to explore the mechanisms by which a storytelling strategy increases enrollment of African Americans into ADRD research in general, and into a specific study designed to address health disparities. Realizing the goals of this study will increase racial and ethnic diversity in ADRD research at a leading NIA-funded ADRC and ultimately, help to reduce cognitive health disparities amongst African Americans. Findings from this study will directly inform best practices for increasing diversity within the national AD Centers network, with significant implications for a range of underrepresented populations. Furthermore, these findings will also have applications in other disease contexts in which scientific progress is constrained by insufficient recruitment of persons from underrepresented racial and ethnic minority groups.