The Icahn School of Medicine at Mount Sinai is one of 16 academic medical research centers to participate in the Asian Cohort for Alzheimer’s Disease (ACAD) study, funded by a $40.5 million grant from the National Institute on Aging (NIA), part of the National Institutes of Health (NIH). 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.

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, despite the proportion of Asian Americans in the United States estimated to be more than seven percent and the proportion of Asian Canadians, more than 20 percent —it is unclear if current research findings based on those populations are broadly applicable to this ethnic group. To find out, the ACAD is initially recruiting adults age 60 and older, with or without cognitive issues, who are of Chinese, Korean, and/or Vietnamese ancestry with plans to expand to other groups as the project moves along. Participants are asked to complete a lifestyle and demographic questionnaire, undergo a cognitive assessment, and provide a saliva and/or optional blood sample.

“It is very exciting to be a part of ACAD. This work represents a major step forward in studying Alzheimer’s disease in older Asian populations in the United States and Canada, especially because their representation in clinical research remains historically low. As a result of this low representation, there is a lack of culturally and linguistically tailored assessment tools and targeted biomarker testing that can assist with elucidating disease and prevention mechanisms in these rapidly growing populations,” says Clara Li, MD, Associate Professor of Psychiatry and site Principal Investigator of the trial at the Alzheimer’s Disease Research Center at Mount Sinai.

“The mission of this work aligns with the current and upcoming funded studies that we are leading at Icahn Mount Sinai to develop and validate new ways to detect, diagnose, treat, and prevent Alzheimer’s disease and Alzheimer’s disease-related dementias in older Asian Americans,” Dr. Li adds. “The overarching goals of these projects are to assist older Asian Americans with further understanding the disease, reduce bias, and encourage them to seek specialized care for early diagnosis, yet have the appropriate and necessary tools available for diagnostic accuracy and treatment/intervention options.”

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.

The research team engaged community leaders to learn the best method of reaching local Asian communities in each of the nine recruitment sites, which are 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, epidemiology, and experts who have devoted their careers to studying the health of Asians in the United States and Canada, as well as community partners and early-career scientists invested in contributing to healthy equity research. Penn Medicine is the lead site and awardee of the grant. Other participating institutions include the 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, Stanford University, Southern California Eye Institute, University of Toronto, University of Washington, and Brigham and Women’s Hospital.

The project is supported by NIA (R56AG069130 and U19AG079774). The content is solely the responsibility of the authors and does not necessarily represent the official views of NIA or the broader NIH. Visit acadstudy.org to learn more.