CARE Registry: An update & plans to further expand the meaningful inclusion of Asian American, Native Hawaiian, and Pacific Islander populations in Alzheimer's disease and related dementias research

The Collaborative Approach for AANHPI Research and Education (CARE) registry aims to address underrepresentation of Asian American, Native Hawaiian, and Pacific Islander (AANHPI) populations in aging, Alzheimer's disease and related dementias (ADRD) and caregiving research. Guided by community-based participatory research principles, all aspects of the CARE registry are propelled by fostering trust and partnerships between academic and community stakeholders. These partnerships enable culturally-tailored engagement strategies to advance recruitment, retention, and inclusion of AANHPI participants in research. Participants enroll by completing a survey online, in-person, or by phone, covering socio-demographics, health, caregiving status, and other information. The survey is available in a growing list of languages including English, Chinese (Simplified/Traditional), Hindi, Japanese, Korean, Samoan, Tagalog, and Vietnamese. Since CARE's launch in October 2020, 10,485 AANHPI adults have enrolled (as of January 13, 2025). The mean age is 54.3 years (standard deviation (SD)=17.9; range: 18-101), with 34.8% (n = 3,657) older adults (≥65 years old). Approximately 14% (n = 1,419) of the participants reported having ADRD symptoms. Among the 1,072 participants who were caregivers, 40.4% reported caring for someone with ADRD. Most (83.1%) CARE participants were foreign-born, with 50.0% speaking limited English. The major cultural groups were Vietnamese (38.2%), Chinese (30.0%), Korean (14.8%), Asian Indian (5.5%), Filipino (5.0%), Native Hawaiians and Pacific Islanders (NHPI) (3.4%), and Japanese (3.2%). CARE is also actively engaging researchers to support their study recruitment of AANHPI participants. Of the 130 recruitment referral requests received, 64 (65.3%) were aging-related, including 49 (38%) ADRD or dementia caregiving studies. Since January 2021, CARE has made over 14,900 referrals to 51 completed studies, with 7,060 CARE participants referred to at least one study. Originally with recruitment primarily in California, CARE is now expanding nationally to enroll an additional 10,000 participants. This effort includes offering additional languages and forming strategic partnerships to target areas with significant populations of AANHPI older adults and targeted outreach efforts to AANHPI groups currently underrepresented in CARE (e.g., Filipino, Asian Indian, NHPI). CARE seeks to advance recruitment and retention science by exploring effective strategies for engaging and retaining AANHPI participants and assessing the registry's impact on research enrollment outcomes.