AFRICAN AMERICAN PARTICIPATION IN AD RESEARCH: EFFECTIVE STRATEGIES

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Project Summary/Abstract Although 16% of the United States population self-identifies as African American (AA), AAs comprise fewer than 6% of research volunteers in studies of Alzheimer disease and related dementias (ADRD). The under-representation by AAs and members of other minorities in research programs that focus on ADRD seriously comprises the ability to fully understand the inherent heterogeneity of these disorders. Moreover, this under-representation obviates the opportunity to assess whether or not diagnostic algorithms and therapeutic and prevention strategies developed from studies of overwhelmingly non-Hispanic white cohorts are equally relevant for diverse populations. The network of Alzheimer Disuse Centers (ADCs), funded by the National Institute on Aging (NIA), has yet to systematically address how to successfully recruit and retain research volunteers from under-represented groups in studies of ADRD. This Project proposes that all 31 ADCs participate in a Workshop that is dedicated to developing, and then testing, effective strategies to improve the recruitment, retention, and participation of AAs in ADRD research. The Workshop will be held in October, 2018, at Washington University School of Medicine and hosted by the School's Knight Alzheimer Disease Research Center (ADRC), one of the 31 ADCs. [Note: The Workshop specifically addresses AA participation as AAs are twice as likely to develop Alzheimer disease dementia as non-Hispanic whites, but the strategies that are developed in this Workshop are expected also to be relevant for other under-represented groups.] The Workshop is designed to encourage the participation of all ADCs and also other stakeholders in ADRD research, including the Alzheimer's Association (both the national office and the Greater Missouri Chapter in St. Louis), the national organization AfricanAmericansAgainstAlzheimersDisease, and the NIA. Community engagement will be integral to the Workshop deliberations and output, and St. Louis community groups (including the African American Advisory Board of the Knight ADRC, the St. Louis Chapter of Links, Inc., and the St. Louis Clergy Coalition) and officials from relevant Washington University programs (including the Office of Diversity and Inclusion, the Center for Community Health Partnerships and Research, and the Health Communication Research Laboratory) will be active participants. The scientific program of the Workshop will feature ten national leaders in minority recruitment; 6 of the speakers are women and 5 are AA. The “best practices” developed and evaluated by the Workshop will be disseminated to the ADC network and the scientific community at large to enable improved AA participation in ADRC research.