Donna Clemons leapt at the opportunity to participate in clinical research that could shed light on why the prevalence of Alzheimer’s disease is much higher among African Americans.
Clemons, president of a Dallas brand advertising company, said that it was a “no-brainer” to join the study after watching her mother’s cognitive decline three years ago. “For me,” she said, “to be a part of research where I can have the power to change the future — that’s a game-changer.”
She is participating in a study run by scientists at the University of North Texas Health Science Center’s Institute for Translational Research in Fort Worth. The large multiyear clinical research study that began in 2017 includes 1,000 Mexican Americans and 1,000 non-Hispanic white people. The Health Science Center then received a $45 million grant from the National Institutes of Health last September that helped complete a cutting-edge brain imaging center.
The researchers are now expanding the study and recruiting 1,000 African Americans, including Clemons, into this study group with another $7 million investment from the Health Science Center. This clinical study in a diverse population could help researchers and clinicians determine the disease’s risk factors.
“The long-term goal is to deal with the impacts of this devastating disease,” said Sid O’Bryant, the institute’s executive director and lead investigator on this project.
People with Alzheimer’s have memory loss, confusion and other problems with their cognition. Scientists think that these symptoms are caused when the toxic proteins called “amyloid-beta” and “tau” build up in their brains.
But the accumulation of these proteins into the plaques and tangles that disrupt brain cells takes a long time — and longer still before people experience those cognitive symptoms.
The Health Science Center researchers are trying to better understand the disease by measuring the amount of amyloid-beta and tau present in the brain over time.
They use an imaging test called a PET scan to label these toxic proteins and take a picture of where the proteins are in a person’s brain. In parallel, they use another imaging test called an MRI scan to look for any signs of neurodegeneration. Scientists can then track how the disease progresses by taking these scans every two years for people over the age of 50.
These tests form a framework that Alzheimer’s researchers use to define the disease at the biological level. But more research studies like this are necessary to fill the gaps in how scientists describe cognitive decline. The scientists also want to distinguish between Alzheimer’s and other disorders in the brain that can also cause dementia.
O’Bryant, the Health Science Center researcher, has firsthand experience with this. While he was a medical student, his grandmother started having symptoms of dementia. But it was extremely difficult for him and his family to actually get a positive Alzheimer’s diagnosis for her without access to a clinic specializing in dementia research. “She deserved more, and I wasn’t able to get that to her at the time,” he said.
His family connection to the disease is what makes O’Bryant passionate about removing as many barriers as possible to people participating in clinical Alzheimer’s research.
He and his colleagues realized early on that building trust in historically underrepresented communities would require building long-standing relationships with the people participating in the research.
O’Bryant said that researchers need to be “giving back” to the people participating in the study. So, study participants are compensated for their time and can request all their data from any of the tests the researchers perform.
“I just felt like I was in good hands,” Clemons said, recalling her first visit to the facilities at the institute.
She said that rather than sit and worry about her own future, being part of this study offered her a way to honor her mother. Her mother, Gertrude Green, was a strong, independent woman used to doing everything for herself. But as her health deteriorated, she needed her family’s help. Clemons and her siblings all came together to manage caregiver responsibilities in her mother’s last years.
“This study will begin to fill a significant gap in understanding Alzheimer’s disease and related dementias more comprehensively,” said Barbara Bendlin, a scientist at the Wisconsin Alzheimer’s Disease Research Center. Bendlin, a professor of medicine at the University of Wisconsin, is not involved with the Health Science Center study.
Right now, clinicians don’t have one simple test to diagnose Alzheimer’s disease. The Food and Drug Administration has approved some of these imaging tests for Alzheimer’s biomarkers for use in the clinic. But scientists are at an early stage of examining how these Alzheimer’s disease biomarkers relate to future dementia risk among diverse groups of research participants.
Bendlin said researchers are interested in using the levels of these biomarkers present to guide decisions about which people to enroll in clinical trials, or even who receives certain treatments for Alzheimer’s disease.
She added that these clinical studies need to be representative of the entire population to shape potential new therapies. O’Bryant’s preliminary findings suggest that amyloid-beta levels in Mexican Americans and African Americans are lower than levels found in non-Hispanic white people. Researchers want to explore what other factors, including socioeconomic ones, increase the risk of Alzheimer’s.
The most important thing Clemons has learned from the study is that her family is not alone in dealing with the impacts of the disease. “I’m looking forward to the day when there’s a cure or some way to maintain [the disease], and I can say [that] I was a part of that research,” she said.
For information about participating in an Alzheimer’s study, contact the Institute for Translational Research at 817-735-2963 or sign up at https://apps.unthsc.edu/itr/join.
