Bridging Gaps in Brain Health Research
More than 210,000 people in North Carolina have Alzheimer's disease, and the number is growing. The true burden of dementia in the state is higher still, considering those who suffer from less common types of dementia and those who serve as unpaid family caregivers.
The North Carolina Registry for Brain Health aims to help relieve the burden by educating North Carolinians, giving them an opportunity to participate in research, and helping researchers recruit study volunteers.
"Our mission is two-fold — to increase the awareness of North Carolinians about brain health and to get people involved in research to prevent and treat Alzheimer’s disease and related disorders," said Kathleen Welsh-Bohmer, PhD, professor in psychiatry and behavioral sciences at Duke, who co-leads the registry along with Goldie Smith Byrd, PhD, professor of social sciences and health policy and director of the Maya Angelou Center for Health Equity at Wake Forest University.
Funded by the state, the registry has three other partner universities in addition to Duke and Wake Forest: East Carolina University, North Carolina A&T State University, and the University of North Carolina at Chapel Hill. At Duke, the registry works closely with the Duke-UNC Alzheimer's Disease Research Center.
Taking Control of Brain Health
"For the general population," said Welsh-Bohmer, "our big push is to make people aware of the registry as a vehicle that allows them to take control of their own brain health."
People on the registry receive a monthly email and quarterly newsletter with brain health tips, caregiver resources, information about studies enrolling volunteers, and results from recent research. The North Carolina Registry for Brain Health website regularly updates seven categories of science-backed suggestions for better brain health, from healthy eating to emotional well-being.
More than 12,000 people, aged 18 and older, are on the registry, which launched in 2019. Some have dementia, but most don't.
The five partner institutions grow the registry through grassroots community engagement, attending meetings of civic organizations, community groups, and religious congregations to educate people about brain health and the importance of dementia-related research.
"We are very diverse in terms of the communities we engage," Byrd said. "We go into communities of different races and ethnicities, advantaged and disadvantaged neighborhoods, rural areas, urban areas, and suburban areas."
Supporting Research
All members of the registry have the option of participating in research, but it's not a requirement. "The goal is to make sure they have access to research if they want to get involved," Welsh-Bohmer said. "They are in control. They are not going to have researchers call them out of the blue."
For those that do get involved, it can be another form of education. "Just engaging in research studies is a way to improve brain health," said Byrd, citing studies that include healthy activities like exercise or cognitive training.
Researchers fill out a form on the registry website. If the registry's executive team approves the study, it's posted on the website and emails go out to those on the list who are likely to meet the eligibility requirements. Registry staff field inquiries from participants and put them in touch with researchers.
"The only way we're going to develop treatments that will work for all people is to make sure we have people from all groups represented in our studies."
- Kathleen Welsh-Bohmer
Welsh-Bohmer said the registry is currently supporting about 20 active studies. She invites more researchers to get in touch. "We're here, and we help foster research to advance our understanding of the brain and brain health," she said.
Brenda Plassman, PhD, professor in psychiatry and behavioral sciences, used the registry to recruit volunteers for the PACT study, which is evaluating the potential for computerized cognitive training to prevent or delay dementia. "We were able to exceed our enrollment goal of 500 participants and meet our goals for the diversity of participants," Plassman said.
Diverse Demographics
African Americans and Hispanics have traditionally been underrepresented in studies related to brain health, dementia prevention, or dementia treatment, despite the fact that African Americans have double the risk of dementia compared to white people and Hispanics have 1.5 times the risk.
"The only way we're going to develop treatments that will work for all people," Welsh-Bohmer said, "is to make sure we have people from all groups represented in our studies."
The most recent numbers show that 31% of those on the registry are African American, and 61% are white.
Welsh-Bohmer and Byrd are seeking to increase male representation in the registry, which is about 75% female. To do so, they are engaging with veterans' groups, fraternities, and athletic groups.
All 100 North Carolina counties are represented in the registry, with heavier concentrations from the Triangle and the Triad regions. Welsh-Bohmer is hoping to boost the numbers from rural parts of the state, because people in some of these areas have higher rates of dementia. "We're reaching out to the groups at highest risk to make sure they are fully informed and doing everything they can to ensure overall health and brain health," she said.
In the past, people in rural areas often have not been fully represented in research because participation can require driving long distances and attending appointments at inconvenient times of day.
“By partnering with communities to overcome these issues,” Welsh-Bohmer said, “we’re striving to make participation feasible for all people across the state.”
Mary-Russell Roberson is a freelance writer in Durham.