As a member of the Alzheimer’s Prevention Registry, you are well aware of the many opportunities to participate in studies aimed at preventing and ultimately ending Alzheimer’s disease. What you may not know is that people from diverse backgrounds are often underrepresented in these studies. This means there is less information to help doctors understand the incidence and cultural differences of dementia in their communities.
A new registry aims to change this. CARE, Collaborative Approach to Asian Americans and Pacific Islanders Research and Education, was just rolled out by the University of California San Francisco (UCSF) and several community partners. The purpose of CARE is to address the gap and reduce the disparities in research participation among Asian Americans and Pacific Islanders (AAPI) by creating a research registry similar to the Alzheimer’s Prevention Registry.
“The goal of our CARE Registry is to increase AAPI participation in research related to prevention, intervention and treatment of cognitive decline, Alzheimer’s disease and related dementias,” said Van Park, Ph.D., MPH, Associate Professor, UCSF School of Nursing and the principal investigator for CARE.
The AAPI community consists of more than 50 cultural groups and over 100 languages and dialects. At 7% of the U.S. population, they are one of the fastest growing minorities. Yet very little research is funded for this community.
CARE's outreach and recruitment are available in five spoken and written languages. As more resources become available, they hope to expand to additional languages to engage more people in the registry.
“AAPI individuals are among the least represented groups in medical research,” said Dr. Park. “I believe they would be more apt to participate if their cultural and language needs were addressed.”
While many studies have demonstrated the impact of Alzheimer’s and dementia for the general population, there is not a clear understanding in the AAPI community due to limited data. We do know AAPIs, more than any other group, believe they are expected to care for their parents. This comes from an AARP nationwide study that also found 42% were caring for an older adult and families were reluctant to put older family members in a facility as they age.
The new CARE registry will give the AAPI community a voice in research and provide a venue to connect researchers with potential participants. People eligible for the CARE registry must:
You can learn more about the CARE registry, including qualifications and enrollment here.