Penn Medicine, Philadelphia Experts To Head Study of Alzheimer’s Disease in Asian Americans and Asian Canadians
A $40.5 million grant from the National Institute on Aging (NIA), part of the National Institutes of Health (NIH), will fund the Asian Cohort for Alzheimer’s Disease (ACAD) study at Penn Medicine and 15 other academic research centers across the United States and Canada. Led by Li-San Wang, PhD, the Peter C. Nowell, M.D. Professor of Pathology and Laboratory Medicine in the Perelman School of Medicine at the University of Pennsylvania, the project represents the first major Alzheimer’s disease genetics cohort for Asian Americans and Asian Canadians, populations currently underrepresented in Alzheimer’s disease research. The other principal investigators for the project are Gyungah Jun, PhD, at Boston University Chobanian & Avedisian School of Medicine, Van Ta Park, PhD, at the University of California, San Francisco (UCSF), and Helena Chui, PhD, at University of Southern California.
Since other national datasets and clinical trials for Alzheimer’s disease research have low representation from people of Asian ancestry – generally less than 3 percent, and as low as 0.5 percent– it’s unclear if those research findings are broadly applicable to this minority group. To find out, the ACAD is recruiting adults age 60 and older, with or without cognitive issues, from Chinese, Korean, and Vietnamese ancestry. Participants are asked to complete a lifestyle and demographic questionnaire, undergo a cognitive assessment, and provide a saliva and/or optional blood sample.
“Alzheimer’s disease is one of biggest health challenges of the 21st century, and while Asians are the fastest growing minority in both the U.S. and Canada, they are disproportionately underrepresented in Alzheimer’s disease research,” said Wang, who also serves as the co-lead of the Data Management and Statistical Core at the Penn Alzheimer’s Disease Research Center and a member of the Institute on Aging at Penn. “This is a very ambitious project because we need to gather a critical mass of data on lifestyle and genetic risk factors to have enough statistical power to understand causes of the disease and strategies for treatment that may be specific to these Asian populations in the U.S. and Canada.”
Researchers will analyze the genetic data from the samples to identify risk variants in the Asian American and Asian Canadian population, compared to other populations and to those living in Asia. Based on these analyses, their goal is to develop blood biomarker benchmarks and a polygenic risk score model to measure the risk for Alzheimer’s disease specifically among Asian Americans and Asian Canadians. They will also examine non-genetic biomarkers in combination with lifestyle and clinical information to look for clues to other contributing factors to Alzheimer’s disease. The researchers plan to continue to seek collaborations to expand ACAD and follow up on the participants’ health as they age to obtain a clearer picture of Alzheimer’s disease progression.
The grant builds on a two-year, NIA-funded pilot grant awarded in September 2020 to assess the feasibility of the ACAD study design. As of May 2023, more than 1,800 individuals have joined the interest list for the study, with 713 formally consented to enroll. The goal of the new grant is to expand enrollment and recruit at least 5,000 participants over five years.
“We want to understand more about the needs of Asian Americans and Asian Canadians, engage them, and help them understand the disease, in an effort to destigmatize Alzheimer’s disease within these communities,” Wang said. “A major priority of this project is to help the community – we’re not just going in and taking samples. The response during the pilot phase was incredible excitement to participate, which reinforced why we’re doing this and the need for health equity in Alzheimer’s disease research.”
The research team engaged community leaders to learn how to best reach local Asian communities in each of the nine recruitment sites, located in cities with large Chinese, Korean, and/or Vietnamese populations. By leveraging existing relationships and infrastructure and using community-based participatory research principles, the team aims to build trust, raise awareness and overcome potential barriers to participation, including language. A crucial part of the study involves training bilingual staff who can communicate with interested participants in their preferred language and help ensure that the outreach materials and strategies are designed to effectively reach older adults with Chinese, Korean or Vietnamese heritage.
The research team includes international leaders in Alzheimer’s disease, genetics, and epidemiology, and experts who have devoted their careers to studying the health of Asians in the U.S. and Canada, as well as community partners and early-career scientists invested in contributing to healthy equity research. Penn investigators include Tiffany Chow, MD, an adjunct professor, and Gerard Schellenberg, PhD, a professor, both of Pathology and Laboratory Medicine, Mingyao Li, PhD, a professor of Biostatistics, Epidemiology, and Informatics, Wan-Ping Lee, PhD, and Fanny Yuk Yee Leung, PhD, both research assistant professors of Pathology and Laboratory Medicine, and Pei-Chuan Ho, PhD, a research associate in Pathology and Laboratory Medicine. Other participating institutions include University of British Columbia, University of California San Diego, University of California Irvine, Columbia University, Englewood Health, Indiana University, New York University’s Rory Meyers College of Nursing, Icahn School of Medicine at Mount Sinai, Stanford University, Southern California Eye Institute, University of Toronto, University of Washington, and Brigham and Women’s Hospital.