Research takes a community, and it should therefore reflect the entire community. However, results that are often thought to be relevant to everyone only truly reflect those who participated in the studies. In the United States, those study participants are usually upper-middle-class, well-educated Caucasians. Can we be certain that what we find in one group of people is as true for others? Not always. For example, the ApoE4 gene, widely seen as increasing the risk for Alzheimer’s disease, confers less risk in African American or Hispanic/Latino populations than in Caucasians1. Unfortunately, despite 18% of the US population being Hispanic/Latino, this group makes up less than 1% of research participants.
In an effort to better engage with this important demographic, the University of Colorado (CU) Alzheimer’s and Cognition Center is a member in the Engaging Communities of Hispanics for Aging Research (ECHAR) Network. This group was founded to develop a partnership between research teams like ours and Hispanic/Latino community members, through a process called Boot Camp Translation, to co-learn and co-create messaging related to a health topic such as Alzheimer’s disease. Through this process of mutual education, we are learning more about barriers to research and the needs and perspectives of this community. Similar efforts in the past have helped us to establish the African American Alzheimer’s Advisory Council (4AC), and the CU Alzheimer’s and Cognition Center intends to continue to listen to everyone in our diverse community to ensure our research serves as many people as possible.
1. Serrano-Pozo, A., Das, S., & Hyman, B. T. (2021). APOE and Alzheimer’s disease: advances in genetics, pathophysiology, and therapeutic approaches. The Lancet. Neurology, 20(1), 68–80. https://doi.org/10.1016/S1474-4422(20)30412-9