Background:The National Institute on Aging (NIA) is working to increase access of its AD/ADRD clinical trials (CT) into community health care settings. Concerns exist in the field regarding the feasibility of conducting AD/ADRD CTs outside of academic settings given the testing required within CT protocols. We evaluated recently awarded NIA CTs to document their types and frequency of diagnostic tests required. Findings provide NIA the opportunity to understand the potential test burden on sites and consented participants. Method: We conducted a systematic content analysis of recently funded NIA AD/ADRD CTs involving human subjects to assess the commitment required of participants and the number and type of tests required across protocols (start dates: 2/1/20 -9/30/2021 (N = 115)). Documented tests included: imaging, biospecimen, genetic, sleep, cognitive, and mental health. Findings were analyzed by the CTs' standardized Common Alzheimer's and Related Dementias Research Ontology (CADRO) category. Result: Most CTs (65%) were CADRO C (Translational Research/Clinical Interventions) or E (Dementia Care/Disease Impact; 25%); CADRO E had substantially fewer tests required of participants. Most trials (75%) asked consented participants for less than a year commitment (median = 185 days). Top tests required were cognitive (78% of trials); mental health/well-being (57%); brain imaging (46%; e.g., MRI, PET, MRS), and blood collection (37%). Fewer CTs required lumbar spinal tap (12%). Initial analyses indicate that potentially 75 unique cognitive tests were documented across the 90 CTs assessing cognition, and that participants were asked to complete a median 8.5 cognitive tests per trial (range: 1 to 71 tests).
Background: Asian Americans and Pacific Islanders (AAPI) are one of the fastestgrowing populations in the United States, yet these communities comprise less than one percent of participants in NIH's Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) clinical research. This underrepresentation is due to numerous barriers well-documented in the literature, with a key deterrent being a lack of culturally and linguistically appropriate outreach materials. This abstract presents findings from focus groups conducted by the National Institute on Aging (NIA) to identify culturally and linguistically appropriate message concepts that raise awareness, address barriers and motivate Asian American and Pacific Islanders to consider participation in AD/ADRD research studies.Method: Eighteen virtual focus groups (N = 103 individuals) were conducted with Chinese Americans, Filipino Americans, and Indian Americans who are at-risk for AD/ADRD or are caregivers to people living with dementia. Focus groups were conducted in Chinese, Hindi, Tagalog and English. The sessions tested multiple audiencetailored message concepts designed to increase interest and encourage participation in AD/ADRD clinical research. These discussions also examined participants' preferred language, terminology and communication approaches.Result: Overall, message concepts that 1) emphasized the value of caring for family members; 2) offered a sense of hope; 3) communicated a clear call to action; and 4) provided opportunities to learn more information about clinical research resonated across all groups. Between participant audiences, there were some important differences, including around terminology preferences. For example, Chinese-American participants expressed concern about the term "caregiver" as it implied that taking care of a loved one was a burden or a professional job, rather than a familial responsibility. Concept visuals will be presented. Conclusion:This research conducted by NIA improves our understanding of messaging concepts that do and do not resonate with AAPI, providing valuable insight into themes that should be leveraged to effectively promote awareness about AD/ADRD clinical
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