The burden of Alzheimer’s disease does not weigh equally on all communities. Black Americans have about twice the risk of developing the devastating neurodegenerative disease than non-Hispanic white Americans.

The factors that place blacks at high risk remain poorly understood, in part because blacks have historically and consistently been under-represented in studies of Alzheimer’s disease. Without a large enough pool of black study participants, it is not possible to thoroughly study the myriad of social and other factors that put blacks at risk.

Two new grants awarded to researchers at Washington University in St. Louis will support efforts to bring more black Americans into Alzheimer’s research studies to better understand the health challenges facing the community . Joyce Balls-Berry, PhD, an associate professor of neurology in the Faculty of Medicine, received a $ 3.4 million grant to recruit black Americans and other members of disadvantaged communities into a registry for research studies. Darrell Hudson, PhD, associate professor of public health at Brown School, and Ganesh M. Babulal, PhD, OTD, an assistant professor of neurology in the Faculty of Medicine, jointly received a $ 3.7 million grant to study risk factors for cognitive decline in black Americans. Both studies are supported by the National Institute on Aging of the National Institutes of Health (NIH).

Build a diverse registry that benefits participants and researchers

Berry Balls

Balls-Berry’s work builds on the foundation laid by the African-American Advisory Council of Charles F. and Joanne of the University of Washington. Knight Alzheimer’s Research Center. Established in 2000 by national civil rights activist Norman Seay and John C. Morris, MD, Harvey A. and Dorismae Hacker Friedman Distinguished Professor of Neurology, the advisory board has gradually broadened the participation of African Americans in Alzheimer’s disease studies at the University of Washington by promoting awareness strategies tailored and tailored to the culture.

But a lot of work remains to be done, Balls-Berry said. The number of black volunteers is still relatively small and she is concerned that she will overload them with too many requests to participate in the study. Therefore, she is launching the COEQUAL Registry (Creating Opportunities to Increase Equity and Equality in Health for People at Risk of Alzheimer’s Disease and Associated Dementias). The plan is to use a patient and community focused framework to recruit, register and retain 2,000 new volunteers.

Historically, members of under-represented groups have too often been excluded from the process of designing and planning biomedical studies, resulting in research that does not meet their needs, Balls-Berry said. To ensure that the registry will benefit participants and their communities as well as researchers, she works closely with civic leaders and patient and family advocates to determine every aspect of the registry: what data to collect, how to collect it. how to collect and use them, how to give participants and the community access to registry data, and how to report back to the community on the results of data-driven studies.

“As a black scientist, I always think about the fact that often our voices are not heard,” Balls-Berry said. “I used to teach ‘Introduction to Community Research’ and I would say to my students, ‘You come down to the community. You ask a ton of questions. You take blood. You offer a few gift cards as a thank you. You write papers. You get a promotion. But you never come back to present your findings. You never asked the question “How can this data be used by the local community to inform policy changes in these areas?” »This is how we not want to do it. We want to look at issues related to the cultural impact of the science we do. We want to apply our findings in a way that won’t cause more disparities, won’t cause stigma. There are human beings behind every number in a study.

Finding factors that put blacks at risk

Meanwhile, Hudson, a social scientist, and Babulal, a health science researcher, take a multidisciplinary, multidimensional approach to studying the factors that put blacks at risk for Alzheimer’s disease. Their study combines cutting-edge biomedical research with community-based research to study how mental health and other factors influence overall health and affect the risk of cognitive decline in black Americans. The study will use the NIA Research Framework on Health Disparities to guide the assessment of the environmental, socio-cultural, behavioral and biological factors involved. Their study is known as ARCHES, for Aging Research Characterization of Health Equity Via Social Determinants.

The researchers recruit a diverse group of 300 blacks from St. Louis to represent a wide range of life experiences among members of the black community. To recruit such a large and diverse group of participants, the researchers established a Community Advisory Board and partnered with community organizations to help develop communication messages and design strategies to reach people from diverse geographic backgrounds. and socio-demographic.

Hudson

“There is a lot of heterogeneity within the black American population socio-economically, geographically, in experiences and so on,” Hudson said. “Throughout St. Louis and other similar communities, people live in essentially separate and unequal social and physical environments, and this reverberates throughout life, resulting in premature death and many different illnesses. . We think it’s important to get a truly representative sample to study how these physical and social environmental factors can affect black Americans and their risk for Alzheimer’s disease.

Hudson and Babulal study how factors such as depression, stress, access to health care, experience of discrimination, and employment affect cognitive function and molecular biomarkers of Alzheimer’s disease. The findings could provide insight into the roots of black Americans’ high risk for the disease and potentially identify new strategies to reduce that risk.

Babulal

“We don’t have a complete picture of the impact all of these factors have on health and aging in America,” Babulal said. “We know that social experiences affect the body, but we’re still investigating how, exactly, environmental and health-related behaviors interact with biology to influence risk for cognitive impairment. We need to know the causal mechanisms so that we can find ways to intervene and reduce these health inequalities that have existed for decades and more.