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Abstract Details

Examining Age-Specific Barriers and Facilitators to Research Participation in Underrepresented Americans
Aging, Dementia, Cognitive, and Behavioral Neurology
P14 - Poster Session 14 (11:45 AM-12:45 PM)
7-003

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.

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

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).

Barriers and facilitators to ADRD research participation varied across the age spectrum. Survey responses may inform age-specific strategies to address disparities in ADRD research participation amongst African Americans
Authors/Disclosures
Gregory S. Day, MD, MSc, FAAN (Mayo Clinic)
PRESENTER
Dr. Day has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Parabon Nanolabs. The institution of Dr. Day has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Eli Lilly. Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Arialys Therapeutics. Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Ionis. Dr. Day has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for DynaMed (EBSCO Health). Dr. Day has stock in ANI Pharmaceuticals. The institution of Dr. Day has received research support from National Institutes of Health / NIA. The institution of Dr. Day has received research support from Chan Zuckerberg Initiative. The institution of Dr. Day has received research support from Alzheimer's Association. The institution of Dr. Day has received research support from National Institutes of Health / NINDS. The institution of Dr. Day has received research support from Horizon Therapeutics. The institution of Dr. Day has received research support from AVID Radiopharmaceuticals. Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a Presenter at Annual Meeting (CME) with American Academy of Neurology. Dr. Day has received personal compensation in the range of $500-$4,999 for serving as a Content Development (CME) with PeerView, Inc. Dr. Day has received personal compensation in the range of $5,000-$9,999 for serving as a Content Development (CME) with Continuing Education, Inc. Dr. Day has a non-compensated relationship as a Clinical Director with AntiNMDA Receptor Encephalitis Foundation that is relevant to AAN interests or activities.
Nicole R. Nissim, PhD Dr. Nissim has nothing to disclose.
Michelle Fudge (Mayo Clinic) Ms. Fudge has nothing to disclose.
Christian Lachner Christian Lachner has nothing to disclose.
Neill R. Graff-Radford, MD, FAAN (Mayo Clinic Jacksonville) The institution of Dr. Graff-Radford has received research support from Biogen. The institution of Dr. Graff-Radford has received research support from Lilly. The institution of Dr. Graff-Radford has received research support from Novartis. The institution of Dr. Graff-Radford has received research support from AbbVie. Dr. Graff-Radford has received publishing royalties from a publication relating to health care.
John A. Lucas John A. Lucas has received personal compensation in the range of $500-$4,999 for serving as an officer or member of the Board of Directors for American Board of Clinical Neuropsychology.