Collaborative Approach for Asian Americans, Native Hawaiians, and Pacific Islanders Research and Education (CARE) 2.0

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Project Summary/Abstract of CARE 2.0 Despite being the fastest growing racial population in the United States, Asian American, Native Hawaiian, and Pacific Islander (AANHPI) persons remain severely underrepresented in research. For example, less than 3% of participants in the National Alzheimer's Coordinating Center database are AANHPI individuals and even fewer are enrolled in clinical trials of promising therapeutics. The Collaborative Approach for Research and Education (CARE) registry (R24 AG063718) is a US multi-lingual registry built to improve AANHPI representation in Alzheimer’s disease and related dementias (ADRD), aging, and caregiving research. Launched in October 2020, CARE has enrolled 9,405 AANHPI adults (as of 10/2/22) including 55.9% with limited English proficiency and 80.9% with no prior research participation experience. CARE has referred more than >5,500 participants to 27 studies that are in various stages of recruitment and study completion. As a critical next step and guided by the NIA health disparities framework, we propose CARE 2.0 to strategically expand the registry, advance the science of recruitment and retention of AANHPI participants, and examine the factors associated with research enrollment decisions among referred registry participants. Our specific aims include: 1) Examine attitudes toward health research in a diverse cohort of 10,000 newly recruited AANHPI adults in the US; 2) Elicit perspectives and recommendations from CARE participants about registry retention, and develop, implement, and evaluate recommended registry retention strategies. The Lightning Report Method will be used to conduct dynamic qualitative data analysis and rapid synthesis of the findings to allow rapid comparative analyses across groups and contexts to derive targeted strategies that are sensitive to the diverse needs of retaining AANHPI participants; and 3) Optimize CARE registry participants’ inclusion in NIA- funded and other aging studies and examine factors including study- and participant-level factors associated with participation in research. These innovative aims will increase and test the value of the CARE registry and inform the field more broadly on how best to increase representation of AANHPI groups in research. CARE is well-positioned to complete these aims and contribute to the growing science of recruitment and retention. This proposed application is responsive to PAR-22-093 (Research on Current Topics in ADRD) and NOT-AG-21-033 (Notice of Special Interest: Health Disparities and AD).