The burden of Alzheimer’s disease doesn’t fall on all communities equally.
Black Americans face about double the risk of developing the devastating neurodegenerative disease than non-Hispanic white Americans.
“We want to consider the issues around the cultural impact of the science that we’re doing. We want to apply our findings in ways that won’t cause more disparities, won’t cause stigmatization. There are human beings behind each of the numbers in a study.”
Two research teams at Washington University in St. Louis received grants totaling $7 million to advance racial equity in Alzheimer’s disease research Dec. 14.
Dr. Joyce Balls-Berry, an associate professor of neurology at the School of Medicine, has received a $3.4 million grant to recruit Black Americans and other members of under-resourced communities into a registry for research studies.
“As a Black woman scientist, I always think about the fact that many times our voices aren’t heard,” Balls-Berry said.
The number of Black volunteers is still relatively small, and Balls-Berry worries about overburdening them with too many requests for study participation.
“I used to teach ‘Intro to Community-Engaged Research,’ and I would tell my students, ‘You drop down into the community. You ask a ton of questions. You draw some blood. You give out a few gift cards as a thank you. You write some papers. You get promoted. But you never come back to present your findings. You’ve never asked the question, ‘How can this data be used by the local community to inform policy changes in those areas?’ That’s how we don’t want to do it,” she said.
“We want to consider the issues around the cultural impact of the science that we’re doing. We want to apply our findings in ways that won’t cause more disparities, won’t cause stigmatization. There are human beings behind each of the numbers in a study.”
Consequently, she is launching the COEQUAL Registry (Creating Opportunities to Increase Health Equity and Equality for Persons at risk of Alzheimer’s Disease and Related Dementias). The plan is to use a patient- and community-engaged framework to recruit, enroll and retain 2,000 new volunteers.
Dr. Darrell Hudson, an associate professor of public health at the Brown School, and Dr. Ganesh M. Babulal, an assistant professor of neurology at the School of Medicine, have jointly received a $3.7 million grant to investigate risk factors for cognitive decline among Black Americans. Both studies are supported by the National Institute on Aging of the National Institutes of Health (NIH).
“There’s a lot of heterogeneity within the Black American population socioeconomically, geographically, in experiences and so on,” Hudson said. “Throughout St. Louis and other communities like it, people live in essentially separate and not equal social and physical environments, and that cascades across the life course, leading to premature death and many different illnesses. We think it’s important to obtain a truly representative sample to investigate how these physical and social environmental factors can affect Black Americans and their risk of Alzheimer’s disease.”
The factors that place Black people at elevated risk for Alzheimer’s disease remain poorly understood, partly because Black people historically and systematically have been underrepresented in Alzheimer’s studies.
“We don’t have a full view of how all these factors impact health and aging in America,” Babulal said. “We know social experiences affect the body, but we’re still working out how, exactly, environment and health behaviors interact with biology to influence the risk of cognitive impairment. We need to know the causal mechanisms so we can find ways to intervene and reduce these health inequities that have been present for decades and longer.”
