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Public Health
Van Ta Park1,2,3, Janice Y Tsoh2,3,4, Bora Nam1
1University of California San Francisco School of Nursing, San Francisco, CA, USA.
Alzheimer'S & Dementia : the Journal of the Alzheimer'S Association
|December 23, 2025
Summary
The CARE registry enhances research for Asian American, Native Hawaiian, and Pacific Islander (AANHPI) populations, addressing underrepresentation in aging and dementia studies. It successfully recruits diverse AANHPI participants through culturally tailored methods, improving research inclusion.
Area of Science:
- Gerontology and Alzheimer's Disease Research
- Health Disparities and Health Equity
- Community-Based Participatory Research
Background:
- Asian American, Native Hawaiian, and Pacific Islander (AANHPI) populations are significantly underrepresented in aging and Alzheimer's disease and related dementias (ADRD) research.
- This underrepresentation limits the generalizability of findings and the development of culturally relevant interventions for these communities.
- Existing research often fails to employ community-centered approaches, hindering trust and engagement with AANHPI stakeholders.
Purpose of the Study:
- To establish the Collaborative Approach for AANHPI Research and Education (CARE) registry to address the underrepresentation of AANHPIs in aging, ADRD, and caregiving research.
- To implement community-based participatory research principles to foster trust and partnerships between academic and community stakeholders.
- To develop and evaluate culturally tailored engagement strategies for the recruitment, retention, and inclusion of AANHPI participants in research.
Main Methods:
- The CARE registry utilizes community-based participatory research principles, guided by community and academic partnerships.
- Participants enroll via online, in-person, or phone surveys available in multiple languages, collecting socio-demographic, health, and caregiving information.
- The registry actively supports researchers by providing recruitment referrals for studies focused on AANHPI populations, particularly in aging and ADRD.
Main Results:
- As of January 13, 2025, 10,485 AANHPI adults have enrolled, with a mean age of 54.3 years, including 34.8% older adults (≥65).
- Approximately 14% reported ADRD symptoms, and 40.4% of caregivers cared for someone with ADRD. Most participants (83.1%) were foreign-born, with 50% having limited English proficiency.
- CARE has facilitated over 14,900 referrals to 51 studies since January 2021, with significant recruitment requests for aging and ADRD studies. National expansion is underway.
Conclusions:
- The CARE registry demonstrates a successful community-engaged model for increasing AANHPI participation in aging and ADRD research.
- Culturally tailored recruitment and retention strategies are effective in engaging diverse AANHPI populations, including those with limited English proficiency.
- CARE's expansion aims to further enhance research inclusivity and advance scientific understanding of aging and dementia within AANHPI communities.
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