Increasing Asian Americans’ and Pacific Islanders’ representation in research: Updates from the CARE research recruitment registry

Abstract

AbstractBackgroundThe underrepresentation of Asian Americans and Pacific Islanders (AAPIs) in Alzheimer’s disease and related dementias (ADRD) research is a significant concern given that they are the fastest growing racial group in the US. The Collaborative Approach for AAPIs Research and Education (CARE) research recruitment registry is a collaboration among multiple academic and community partners aimed at creating a sustainable research recruitment source.MethodsBetween October 15, 2020 and January 17, 2022, 7,455 AAPIs enrolled in the CARE registry. The enrollment survey and outreach materials are available in 7 languages: English, Chinese (Simplified/Traditional), Hindi, Korean, Samoan, and Vietnamese. With input from CARE’s community advisory board, CARE was strategically promoted with a focus on health research across the lifespan, including ADRD. Participants can enroll online, by phone, or in‐person. A protocol for CARE‐supported recruitment requests was developed and was presented at four Brain Trust Meetings to promote CARE to the research community.ResultsThe mean age of participants is 53.4 years, including 2,130 middle‐aged (50‐64 years old) and 2,373 older (≥65 years old) participants who may be targeted groups for ADRD research. Overall, 11% (n = 819) reported having ADRD (mean age = 62.8; SD = 15.2). Among the 810 caregivers (mean age = 51.2; SD = 14.6), 37% were ADRD caregivers. Most participants who had self‐reported ADRD (96.2%) and caregivers (78%) were foreign‐born. Most participants with ADRD were Vietnamese (83.6%), followed by Chinese (12.5%). The major cultural groups among ADRD caregivers were Chinese (47.7%), Vietnamese (29%), Korean (10%), Asian Indian (7.7%), and Japanese (7%). Participants from several AAPI cultural groups were smaller in numbers (e.g., Filipino, Native Hawaiians and Pacific Islanders), however, we anticipate they will grow following targeted outreach efforts. Of the 32 recruitment referral requests, 21 were aging‐related, including 18 ADRD or ADRD‐caregiving studies. 798 CARE participants had been referred to participate in 20 requesting studies.ConclusionsCARE has successfully recruited over 7,400 participants despite limitations to conduct in‐person outreach during the COVID‐19 pandemic. The registry is poised to be a valuable recruitment source and a resource for fostering meaningful engagement of AAPIs in ADRD‐related research.