Last month KCBS Radio’s “As Prescribed” explored the possibilities of a new drug test for Alzheimer’s disease. However, experts noted that research into the condition has unfortunately been focused on white patients.
With the CARE Registry, UCSF is working to investigate Alzheimer’s and other related conditions in Asian American, Native Hawaiian and Pacific Islander communities. Dr. Van Ta Park, a professor at UCSF and principal investigator of the registry, joined Alice Wertz on “As Prescribed” to discuss the program.
“It is first of its kind devoted to the diverse Asian Americans, Native Hawaiians and Pacific Islander populations, or AANHPI for short,” said Park. “And the intention of this registry is to improve representation of our diverse communities in clinical research, as well as other health related research. Because unfortunately, AANHPI communities are significantly underrepresented in research.”
According to UCSF, national datasets and clinical trials for Alzheimer’s disease in particular generally have less than 3% participation from AANHPI patients. Without participation from this group, it is unclear whether the research findings really apply to them.
Alzheimer’s disease “is one of several causes of dementia, a brain problem that makes it difficult for you to complete daily tasks without help,” per UCSF.
Around 6 million Americans have the condition, according to the Alzheimer’s Association.
“Research suggests that Asian Americans are less likely than other racial groups to develop Alzheimer's or other dementia, but additional research is necessary to understand prevalence of the disease in this community,” the association said.
Park explained that the “model minority myth” has likely contributed to a lack of funding for research into AANHPI communities. This myth may make some assume that people in these communities are the “same and that they are problem free and don't need to have tailored care or adequate care,” she said.
So far, the CARE registry has enrolled more than 10,000 participants. A vast majority (80%) of those enrolled have never participated in research before.
“That is a huge accomplishment and a testament to the commitment of our academic and community partners – that if you go to the community in the language that they speak and you, you know, provide the education... and stress how important research is and what research is, people step up, people will participate,” said Park.
Along with UCSF, 15 other institutions are joining together to create the Asian Cohort for Alzheimer’s Disease (ACAD), and the National Institute on Aging has provided $40.6 million towards the project. About $6.44 million was allotted for UCSF alone.
Researchers in North America and Asia plan to analyze the genetic data from the samples to identify risk variants for AANHPI patients. Through these analyses, they aim to “develop blood biomarker benchmarks and a genetic risk score for Alzheimer’s disease among Asian Americans and Asian Canadians,” said UCSF.
Learn more about the project here, and the CARE registry here.
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