Health registry centers AAPIs

Asian and Pacific Islander community members from California gathered for an online presentation by the Collaborative Approach for Asian Americans and Pacific Islanders Research and Education the morning of Jan. 23. 

CARE is a collaboration of multiple academic and community partners: the University of California, San Francisco, UC Davis Health, UC Irvine, National Asian Pacific Center on Aging and International Children’s Assistance Network. The network also includes more than 20 partner organizations serving Asian American and Pacific Islander communities in the state. 

CARE aims to address the gap and reduce disparities in research participation among AAPIs through creating a registry of individuals who are interested in participating in various types of research. Van Ta Park, Ph.D., MPH, associate professor, UCSF Department of Community Health Systems, is the principal investigator for this National Institutes of Health/National Institute on Aging-funded project. 

The presentation began with a video highlighting the need for more scientific study data on Asian American and Pacific Islander populations, based on the fact that clinical research projects focusing on AAPI participants funded by the NIH between 1992 and 2018 was 0.17 percent — less than one percent, according to the JAMA Network Open, 2019, an online “open access general medical journal.” CARE Intern Colette Kirkpatrick noted, “This is concerning because AAPI are the fastest growing racial population in the U.S., yet they experience significant health disparities and underrepresentation.” 

Although Asian Americans and Pacific Islanders are diverse, they are often lumped together in research, policy and practice.

The CARE Registry, launched Oct. 15, is the first research registry for Asian Americans and Pacific Islanders. CARE Intern Nicole Phan, said the registry’s theme, “Health Across the Lifespan,” reflects the family and community orientation focus, inclusive of caregivers 18 years old and older, and the belief that protective and risk factors affecting health and cognition may begin in early to mid-life. 

Registry participants understand that they could be contacted about a wide range of topics, including but not limited to: the prevention, intervention, and treatment of cognitive decline, Alzheimer’s disease and related dementias; other aging-related health concerns. The health and wellness of caregivers is also an area of interest, given the role of family caregiving among Asian Americans and Pacific Islanders. 

According to AARP:

AAPIs, more than any other group, believe that caring for parents was expected of them (73 percent vs. 49 percent).

AAPI families are less likely to put their older family members into a facility.

42 percent of AAPIs were caring for an older adult, versus just 22 percent of the general population.

CARE aims to engage and increase Asian American and Pacific Islander participation and representation in research, so that research findings will be more applicable to Asian American and Pacific Islander communities. 

For example, according to the Alzheimer’s Association, the number of Americans living with Alzheimer’s disease and related dementias is expected to increase from 5.7 million to 14 million by 2050. One in three persons aged 65 and older will die from Alzheimer’s disease or related dementias. Recent estimates indicate that Alzheimer’s disease may rank third, just behind heart disease and cancer, as a cause of death for older people. This data is based on the general U.S. population. 

Park, the principal investigator, is advocating at the national level for cohort representation: “We need to be at the table so research findings can be relevant and of benefit to the AAPI community.”

The presentation concluded with a Q-and-A-format session with the CARE team, including Park and research analyst Dr. Marian Tzuang.

With a goal of 10,000 participants, CARE is actively conducting outreach virtually and in-person (when safe to do so) with the following target regions: San Francisco Bay Area, Sacramento County, Los Angeles County and Orange County. However, Asian American and Pacific Islander adults residing in other parts of the U.S. can enroll. Although more than 1,400 participants have enrolled with CARE, only three percent enrolled are of Japanese descent.

To enroll, participants are asked to complete a 10-15 minute survey online, by phone or by mail. 

Participants may receive a $10 gift card after completing the survey. There is no obligation to enroll or remain enrolled, and participants may withdraw at any time.

To register, one must identify as:

Asian, Asian American and/or Pacific Islander

18 years old or older

be able to speak English, Mandarin, Cantonese, Vietnamese, or Korean

be able to read English, simplified Chinese, traditional Chinese, Vietnamese or Korean

Have an interest in participating in potential research

Individuals and organizations interested in learning more about CARE and its registry are encouraged to contact the staff at careaapi@gmail.com, (669) 256-2609 or by visiting http://careregistry.ucsf.edu.

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