to address a major limitation of the ongoing scientific progress regarding Alzheimer's disease and related dementias (ADRD): participants in most ADRD research programs overwhelmingly have been limited to non-Hispanic white persons, thus precluding knowledge as to how ADRD may be represented in nonwhite individuals. Factors that may contribute to successful recruitment and retention of African Americans into ADRD research were discussed and organized into actionable next steps as described within this report.

Introduction Racial and ethnic groups are under-represented among research subjects who assent to brain donation in Alzheimer’s disease research studies. There has been little research on this important topic. While there are some studies that have investigated the barriers to brain donation among African American study volunteers, there is no known research on the factors that influence whether or not Asians or Latinos are willing to donate their brains for research. Methods African American, Caucasian, Asian, and Latino research volunteers were surveyed at fifteen Alzheimer’s Disease Centers to identify predictors of willingness to assent to brain donation. Results Positive predictors included older age, Latino ethnicity, understanding of how the brain is used by researchers, and understanding of what participants need to do to ensure that their brain will be donated. Negative predictors included African/African American race, belief that the body should remain whole at burial, and concern that researchers might not be respectful of the body during autopsy. Discussion The predictive factors identified in this study may be useful for researchers seeking to increase participation of diverse ethnic groups in brain donation.

Introduction: Offering remuneration for participation in studies of aging and Alzheimer Disease (AD) may improve recruitment, particularly among minoritized and low-income groups. But remuneration may also raise ethical problems and reduce altruistic motivations for participation.Methods: A nationally representative sample of Americans (N = 2030) with large (N = 500) Black and Hispanic oversamples was asked about willingness to participate in a longitudinal AD cohort study after random assignment of remuneration ($0, $50/ visit, $100/visit). Respondents were then asked about their perceived burden, risks, and societal contribution from participation.Results: An offer of remuneration increased willingness to participate, with no difference between $50 and $100. The increase was similar across racial, ethnic, and income groups. Remuneration did not affect perceived risks or altruistic benefits. Compensation caused Whites and Hispanics, but not Blacks, to lower the perceived burden.Discussion: Modest levels of remuneration are likely to improve recruitment to AD research studies without causing collateral ethical or motivation problems. Remuneration does not differentially enhance minority recruitment.

Introduction: Research addressing Alzheimer disease and related dementias must examine nonbiological factors influencing the risk for and expression of Alzheimer disease and related dementias. These factors address the interplay of cognition with lived experiences and social and structural determinants of health (SSDOH). However, coordinated measures of SSDOH are limited. Methods:The Knight Alzheimer Disease Research Center (ADRC) at Washington University in St. Louis developed and piloted a comprehensive battery to measure SSDOH. One hundred and twelve participants, very mildly cognitively impaired or unimpaired, enrolled in memory studies completed the electronic SSDOH battery. The Clinical Dementia Rating (CDR) determined the presence or absence of cognitive impairment.Results: Four domains demonstrated above acceptable intraclass correlation scores for test-retest reliability ( ≥ 0.70), including adverse childhood events, discrimination, social status, and early education. Twenty very mildly impaired participants completed the electronic pilot study. Conclusion:Our findings indicate that participants with early-stage symptomatic Alzheimer disease are able to participate in electronic SSDOH data collection. In collaboration with the University of Pennsylvania ADRC, we replaced/modified certain assessments to increase intraclass correlation. The resulting battery, Social and Structural Life-courses Influencing Aging and Dementia (SS-DIAD), can serve as a SSDOH collection tool and is currently utilized in cognitively impaired and unimpaired research participants at both ADRCs.

BackgroundCommunities with the highest disease burden from Alzheimer’s disease and related dementias (ADRD) often experience considerable health disparities. These disparities are due to systematic and structural racism, classism, ageism, and social determinants of health, leading to distrust of and lower engagement with biomedical research. These injustices exacerbate disparities, ultimately leading to less generalizability of research findings. Therefore, we hypothesized that creating a culturally appropriate ADRD research registry called COEQUAL would increase underrepresented communities' engagement in ADRD research.MethodsOur NIH‐funded community and patient‐engaged study aims to identify and enhance current practices to promote high‐yield engagement and retention of diverse participants in ADRD research in St. Louis, Missouri. Based at the Washington University Knight Alzheimer’s Disease Research Center, our partners include Saint Louis University, Wesley House (a social service organization), the Greater Missouri Chapter of the Alzheimer’s Association, and Health Literacy Media. We have a 20‐member Governance Board to create a culturally appropriate research registry. Before creating the COEQUAL registry, we plan to conduct a community needs assessment with listening sessions and a pre/posttest survey of n = 160 community members, patients, caregivers, and healthcare providers aged 45+. We will use direct/indirect recruitment methods like posts in the health system patient portal, social media, and emails/mailers to recruit participants. Our facilitator’s guide and a pre/posttest survey will contain validated and culturally appropriate items to gauge perceptions, practices, and knowledge related to ADRD, willingness to participate in an ADRD research registry, and ways to engage and retain diverse participants. We will oversample participants who self‐identify as Black (African American, African, African Caribbean, or African Ancestry). Findings from the community needs assessment will be used to inform recruitment, ongoing engagement with, and retention of, individuals in ADRD research.ResultWe anticipate gaining knowledge of the perceptions and practices of engaging community members, patients, and providers in creating a culturally appropriate ADRD research registry.ConclusionThe feasibility of creating a culturally appropriate ADRD research registry in St. Louis is critical to ensure justice and generalizability in research. Moreover, using a community and patient‐engaged research approach increases the cultural appropriateness of ADRD research.