Last year, investigators from the Asian Cohort on Alzheimer’s Disease published a paper in Alzheimer’s & Dementia – the journal of the Alzheimer’s Association. The paper recapped ACAD’s history and visions for the future. We discussed ACAD’s journey and what’s next with Pei-Chuan Ho, PhD, the paper’s primary author and research associate at the Penn Neurodegeneration Genomics Center.
What prompted the creation of the Asian Cohort on Alzheimer’s Disease (ACAD)?
AD genetic research in North America has been carried out for over 2 decades. To date, 35 ADRCs across the US have recruited participants with and without AD. However, most ADRC participants are of European descent. Given the complexity of genetic structure, genetic research results cannot be applied to other ancestries directly. New treatments or medications developed based on research of European descent might not have the same efficacy for other ancestries. Despite being one of the fastest growing groups in the US, Asian American ancestry is under-researched in the field of Alzheimer’s. Recognizing this gap, a group of researchers across the country sought the creation of ACAD.
What was the process of developing a research study that spans the United
States and Canada?
ACAD investigators started by identifying potential collaborators who understand the importance of recruiting Asian participants for research. Most Asian Americans do not have experience participating in clinical research, and giving a DNA sample is a deeply personal ask. Understanding this, ACAD required a team of (1) people who know Asian culture and know how to convene with community partners and investigators, (2) clinicians who are experts in dementia screening and can tailor testing to the experiences of Asian immigrants, (3) researchers who are familiar with epidemiology, (4) a team to process and store biosamples, (5) a team to manage data from multiple sites, (6) a team to maintain research rigor and consistency across multiple sites, and (7) a team to coordinate all activities mentioned above. Once the entire team was assembled, the details of the recruitment strategy, data collection protocol, data management plan, training curriculum, and biosample handling SOP fell into place.
What are ACAD’s major aims, and how have they changed since its
inception?
The major goal of ACAD is recruiting Asians in the US and Canada to collect enough genetic information to identify the risky and protected loci unique to Asians. The major goal has not changed, but considering our participants’ cultural backgrounds and life experiences, we have added more lifestyle questionnaires to the data collection packet. These questions also capture differences between Asians in North America and Asia.
How does ACAD recruit?
We recruit from both the community and clinics/hospitals. Each site has its own outreach strategies but generally holds recruitment events at community centers, places of worship, nursing homes, and health fairs. Several co-investigators who are clinicians also recruit their patients. Other important sources are local news or word of mouth. Translations have been vetted by our community partners or Community Advisory Board members to make sure translations are culturally and language-appropriate. Participants’ feedback in the pilot phase is also considered.
What are some highlights coming out of the study?
Our first batch of genetic data is available, and the quality is outstanding, indicating the sample collection protocol is robust. Since most ACAD participants are immigrants, immigration experience (languages, education, occupation transitions) could be a unique feature in disease development. Analyzing lifestyle data highlights the importance of the environment in AD risks and how genetics may interact with major life transitions.
How can people support ACAD’s mission?
We appreciate the trust and support from communities and participants, who have shared many personal experiences. We did not expect to obtain this valuable information when designing the project. We would love to hear voices from the community to serve it better in the future.
Follow us on X and Instagram. We post recruitment highlights, site and team member highlights, and research outcomes. The Asian community is the keystone to make ACAD possible, all we can do is use the information we collected and render research results as the return to community.
To read the full paper visit https://doi.org/10.1002/alz.13611