Enhancing Participation of Historically Minoritized Groups in Alzheimer Disease and Related Dementias Research

Washington University, Saint Louis MO

Investigators

Abstract

Project Summary/Abstract The national Conference, entitled “Enhancing Participation of Historically Minoritized Groups in Alzheimer Disease and Related Dementias Research”, proposed in this application represents the intentional (but COVID pandemic-delayed) follow-up to the 2018 national Workshop, “African American Participation in Alzheimer Research: Effective Strategies”, held at Washington University (WU) in St. Louis on October 10th, 2018. The Workshop was funded by R13 AG059415 (JC Morris, PI) and was hosted by WU’s Knight Alzheimer Disease Research Center (ADRC). The audience for the 2018 Workshop included representatives from national (e.g., the National Institute on Aging, the Alzheimer’s Association, and the AfricanAmericansAgainstAlzheimer’s Network) and St. Louis community (e.g., the African American Advisory Board for the Knight ADRC, the St. Louis Clergy Coalition, and the St. Louis Chapter of the Links, Inc.) organizations that are committed to improving diversity in research efforts to understand, reliably diagnose, and effectively treat Alzheimer Disease and Related Dementias (ADRD). However, the primary audience was the leadership of each of the NIA- funded ADRCs as the ADRC network supports the clinical cohorts that are recruited, enrolled, assessed, and longitudinally followed to provide the data and biospecimens that are essential for scientific studies in ADRD. The proposed Conference will be held at Washington University in St. Louis on October 12-13, 2023, to address the continuing lack in the ADRCs of coordinated strategies to ensure the appropriate recruitment, engagement, and retention of research participants from historically minoritized populations. There are four Conference objectives: 1) to have the ADRC network adopt uniform definitions, terms, and language for use for minoritized populations in ADRD research; 2) to review new batteries that obtain data on the social determinants of health that contribute to racial and ethnic differences in ADRD; 3) to encourage the ADRC network to address community-initiated research topics; and 4) to have the ADRC network incorporate a uniform framework to enhance the recruitment, engagement, and retention of persons from minoritized groups in ADRD research. To date, the proposed Conference has acceptances from 6 Moderators (2 women; 3 Black, 1 Asian; 1 Hispanic/Latinx) and 22 speakers (15 women; 8 Black, 3 Asian, 1 American Indian/Alaska Native; 2 Hispanic/Latino/x/a). The effective strategies developed by the Conference will be used by the ADRC network but also disseminated to the scientific community at large.