As one of the most diverse racial groups in the United States, Asian American, Native Hawaiian, and Pacific Islander (AANHPI) populations are projected to grow significantly in the next 30 years —especially among older adults—yet they remain drastically underrepresented in aging, dementia, and caregiving research. This creates a gap in our understanding of how cultural, linguistic, and social factors affect health outcomes later in life. To address this disparity, the Collaborative Approach for AANHPI Research and Education (CARE) Registry was developed at UCSF with leadership from Dr. Joshua Grill and others at UCI MIND with the goal to easily connect AANHPI adults who are interested in research with opportunities to participate in studies that reflect their interests and lived experiences.
By offering a low-barrier, multilingual enrollment process—and expanding to include 10 languages, numerous cultural groups, and opportunities for people across the U.S. and Pacific Islands—CARE Registry ensures that AANHPI perspectives and experiences are represented in the research that shapes healthcare. The research team behind the study recently published an article in Alzheimer’s & Dementia describing updates from the CARE Registry.
Since its launch in 2020, the CARE Registry has enrolled over 10,000 AANHPI adults-many with limited English proficiency. Since its inception, more than 6,800 registrants have been referred from the registry to at least one research study and over 13,900 study referrals have been made.
The registry’s future goals include enrolling an additional 10,000 individuals while increasing its focus on inclusive engagement, cultural diversity, and geographic reach. Guided by community-based participatory research principles, the CARE Registry bridges longstanding gaps in inclusion and promotes better understanding of aging and brain health in AANHPI communities. These efforts place an emphasis on mutual respect and co-learning between academic researchers and community partners. Through close collaboration with cultural advisors, neighborhood groups, and trusted leaders, the CARE Registry is not only broadening the scope of research but also changing how research is conducted to reflect the values and needs of the communities it serves.
To learn more about the CARE Registry visit: https://careregistry.ucsf.edu/
