Determine barriers and facilitators to participation amongst African Americans in observational research in Alzheimer disease and related dementias (ADRD).

African Americans experience a high burden of ADRD yet are critically underrepresented in ADRD research. Continued lack of representation increases the likelihood that research findings may not generalize to African Americans, including efficacy and safety data from trials of putative ADRD-modifying therapies.

An electronic survey asked respondents to rate barriers and facilitators of research participation on a 0–3-point Likert scale. Responses ≥2 corresponded with barriers/facilitators likely to influence participation decisions. Survey questions were developed in partnership with African American community leaders. Survey invitations were distributed through social media advertisements focused within zip codes surrounding our research center. Differences across participants from different age groups (18-44 [n=76]; 45-64 [n=86], 65+ years [n=86]) were evaluated using nonparametric Kruskal-Wallis tests.

248/294 completed surveys were from local respondents and were included in analyses (96.8% African American). Across all respondents, a requirement to undergo a diagnostic lumbar puncture was the greatest barrier to participation (median=2.0). Attending weekday visits presented a substantial barrier for individuals 18-44 (median=2.0), but not those aged 44-64 (median=1.5) or 65+ years (median=0; p=0.001). Length of visit (≥2 hours) was a greater barrier in younger (median=2.0) vs older respondents (median=1.0; p=0.001). The ability to attend visits in the local community, on weekends, and having access to a door-to-door car service were substantial facilitators for younger respondents (18-44, median=2.0; 65+, median=0; p=0.001). The option to complete tests at home was a substantial facilitator for 18–64-year-old (median=2.0) but not 65+-year-old respondents (median=0; p=0.001). Compensation for meals/transportation were substantial facilitators across all ages (p<0.05).