Article
Diversifying Research and Improving Asian Representation With New Cohort Study for Alzheimer Disease
Author(s):
Li-San Wang, PhD, the Peter C. Nowell, MD, professor of pathology and laboratory medicine, Perelman School of Medicine at the University of Pennsylvania, discussed a study that aims to address the underrepresentation of Asian populations in Alzheimer disease research.
Li-San Wang, PhD
Alzheimer disease (AD) is a complex neurological condition that is influenced by several risk and protective factors, including genetics and life experiences. However, Asian representation in AD research has been significantly limited, despite the disease's heterogeneity. Thus, the cumulative impact of this disparity in research is negatively affecting the understanding of these factors in AD. Consequently, the Asian Cohort for Alzheimer's Disease (ACAD) was created to address the lack of inclusion and establish more comprehensive research efforts.
At the 2023 Alzheimer’s Association International Conference, July 16-20, in Amsterdam, the Netherlands, coauthor Li-San Wang, PhD, the Peter C. Nowell, MD, professor of pathology and laboratory medicine, Perelman School of Medicine at the University of Pennsylvania, and colleagues had a presentation on ACAD in a featured research session. The presentation was solely about the application of community based participatory practices for recruiting the Asian AD cohort study.
Recently, Wang had a conversation with NeurologyLive® during the time of the meeting, about the ACAD study. He talked about the main scientific objectives of the ACAD research project and how the ACAD team has facilitated collaboration as well as engagement with Asian American and Asian Canadian communities. Wang also discussed some of the challenges that the ACAD pilot study faces and shared some of the positive findings from the initial phase of the research.
NeurologyLive: What is the main objective of the AD study conducted on Asian Americans?
Li-San Wang, PhD: ACAD focuses on Asian Americans and Asian Canadians, 2 populations that are underrepresented in the AD research literature and deserve more attention and investment. Each of those groups contains many layers, ranging from country of origin to immigration status, which affords an opportunity to learn more about risk factors for AD. Our main scientific objective is to understand the genetic landscape in these populations, and we will collect other data including cognitive, psychiatric tests and neurological exams, comorbidities, exposure, behavior, socioeconomic determinants of health. We also want to engage these communities, learn more about their needs, and tell them more about this disease. Both scientific findings and the research experience will be valuable for us to decrease health equity gaps for the Asian population in the US and Canada in the future.
How are you leading the study, and what are the specific methodologies used to gather data and analyze the findings?
My leadership strategy has been to facilitate a team that is itself made up of leaders in the AD field, known not only for their experience and knowledge but also their dedication to mentoring faculty. Our wonderful team consists of investigators that I have worked with for many years, who have proven very generous with their wisdom in outreach to underserved communities since the beginning of the project. We have researchers who have dedicated their entire careers to studying and serving the Asian American and Asian Canadian communities, connecting us to the communities and neighborhoods. What excites me is that we have never had the infrastructure to bring all these collaborators together before! It takes a concerted effort to move the needle on Asian American and Asian Canadian inclusion into AD research. Finally, we are fortunate to have young researchers who are committed to serving our communities through scientific research. They drive and lead the actual scientific activities in ACAD effectively. They are the future of our research community and I believe will be a most rewarding legacy of ACAD.
The ACAD team have worked together closely over the past 5 years, initially with almost no support, to develop a study design that is both feasible and scientifically rigorous. We made some key decisions from the beginning that really worked: (1), whenever possible, use established protocols and best practices to leverage existing partnerships and infrastructure and (2), deploy site-specific recruitment strategies that maximize economy of scale. We are grateful that our funding agency, the National Institute on Aging, recognized the importance of this project in offering bridge funding for us to test our strategy, and recently the full project funding. NIA's long-term investment into ACAD’s infrastructure is absolutely essential.
How does the prevalence of AD in the Asian population compare with other ethnic groups?
This is an important question that we will be able to better answer through ACAD! Diagnosis of AD is not trivial within populations that have a variety of preferred languages, cultural assimilation, and educational opportunities, which requires some adaptability in diagnostic instrument choice. This is one of the most important rationales for why the ACAD study is needed. The aim of the recently funded study is to contribute significantly to what is understood about cognitive impairment due to AD among Chinese, Korean and Vietnamese people, the groups that we will focus on initially. My guess is the prevalence is probably comparable with other groups, based on prevalence data available from Asia, while the “How?” of these populations developing AD may be different from other groups.
Are there any key findings from the pilot study to report?
We designed the pilot study to test the feasibility of our recruitment strategy, and the COVID pandemic provided an unexpected challenge to conduct many of our procedures virtually. We were gratified to confirm:
- Our recruitment strategy works well
- That the infrastructure has enough capacity to handle our recruitment targets
- Our data and sample collection protocols work well
- More importantly, the community has been enthusiastic to participate, which our investigators observe as a major shift since the late 1990s.
This relative openness to having cognition evaluated may indicate decreased stigmatization of AD or an interest in pursuing recent pharmaceutical advances, but we are hoping to learn more about attitudes and needs of Asians concerned about AD over the course of the coming study. Our data analysts are going over the genetic, biomarker and clinical data and we hope to report our pilot findings soon.
What are the potential implications of this research for diagnosing and treating AD in the Asian population?
We will understand the idiosyncrasies in the Asian population with respect to diagnosis and prognosis of AD. For example, one of the most promising areas of research is blood-based biomarkers, but clinicians need to know if the Asian population will have different dynamic ranges and best cutoffs when we use these biomarkers in our diagnosis. This is one of the primary aims of our project. We will find new genetic variants that are specific to the Asian population. Another unique opportunity is to compare the ACAD data and data from studies in Asia, we can think of this as a natural experiment where genetic background is comparable but lifestyle, diet and environmental exposure are very different. The integrated analysis that will identify environmental or behavioral risk factors and the underlying biological mechanism may reveal new insights about how Asian populations develop AD. ACAD data will also allow us to better characterize AD in the Asian population, which is important to design inclusive clinical trials.
Transcript edited for clarity. Click here for more coverage of AAIC 2023.
