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| | January 20, 2023 | Huntington’s disease is an inherited brain disorder that tends to surface in the 30s or 40s and causes gradual deterioration of motor, cognitive, and psychiatric symptoms.
That’s why ongoing clinical trials need participants, according to doctors and researchers speaking at the annual Huntington’s disease symposium at the Jackson T. Stevens Spine and Neuroscience Institute at the University of Arkansas School of Medicine (UAMS).
The symposium, held before an in-person and virtual audience on December 8, also focused on disseminating information about the resources available to both patients and their caregivers through Huntington’s disease clinics at UAMS.
Part of the UAMS Movement Disorders Clinic, the clinic has been designated a Center of Excellence by the Huntington’s Disease Society (HDSA) for its interdisciplinary commitment to patients and families. Arkansas’ only HDSA Center of Excellence, with an estimated 200 patients with the disease.
The services and resources we provide to people living with Huntington’s disease and their caregivers are immense.
Hillary Williams, M.D., Ph.D., assistant professor of neurology at UAMS College of Medicine, who specializes in movement disorders, described some of the unique benefits available to patients, families, and caregivers in multidisciplinary clinics.
For example, people with Huntington’s disease often experience movement disorders such as extra, involuntary movements that affect their ability to balance, coordinate, walk, and care for daily activities.
“Having professionals who can identify this early and make sure patients are on the right course of treatment is essential,” she said.
Williams pointed out that physical and occupational therapy (both available at UAMS) have been shown to help people with Huntington’s disease prevent injuries from falls.
Speech-language pathologists, also called speech therapists, help patients with language problems such as grammar and comprehension, as well as language problems such as unclear or difficult-to-understand words.
“Speech-language pathologists may be able to identify the swallowing strategies necessary for a patient to continue swallowing safely,” Williams said, citing jaw retraction during eating as an example.
She said UAMS nutritionists and nutritionists understand that the extra movement experienced by people with Huntington’s disease can alter their metabolic needs and the number of calories needed to maintain their weight. I was. Other Favorable Measures.
“Having a nutritionist or nutritionist on board is a very important part of a multidisciplinary team,” Williams said. . Because people with Huntington’s disease may experience effects on their mental health and cognition.
“This includes irritability, excessive fixation on particular topics, mood instability (rapid and exaggerated changes in mood, sometimes accompanied by uncontrollable emotions), and memory problems.
“Nowadays, movement disorder specialists are often available to help with mood disorders, but if a patient is really struggling, consulting a psychiatrist can enhance care,” she says. said.
She stressed the importance of research.
“Another important thing about the Center of Excellence is the potential availability of research,” says Williams. “Being part of a larger group, being part of a research center, is critical to advancing the future of this disease.”
Williams also promoted resources available to patients and caregivers through the website hdsa.org. She called it “a wonderfully constructed website designed to be easy for patients and families to navigate.”
Williams and other speakers encouraged patients and their caregivers to understand more about the disease and participate in clinical trials to try to find better treatments.
“We love having patients who help us learn more,” she said.
“Most medical research could not have been done without the services of patients who participated in clinical trials,” emphasized Williams. “Clinical trials can be anything from observational learnings from you who are battling this disease, to using family and friends to control research and to find interventions that will one day slow or stop the disease. You can also help with the disease process.”
Aditya Vikram Boddu, M.D., Ph.D., Assistant Professor of Neurology, who recently attended UAMS at the University of Alabama and completed a Movement Disorder Fellowship there, shared an update on research on Huntington’s disease. Responsible for all cases.
He said research shows that combination therapy is needed to better treat Huntington’s disease.
“We’re slowly moving towards a cure,” Boddu said. “Sometimes it’s two steps forward and one step back, and that seems to be the theme.”
He also briefly described some of the research being done at UAMS.
Tuhin Virmani, M.D., who co-directs UAMS Huntington’s Disease Clinic with Rohit Dhall, M.D., learned lessons from a failed trial that was stopped in early 2021 to develop a drug that could slow the progression of the disease.
“Hopefully, we’ll learn more in the future about when that research will become active,” Virmani said.
To participate in or learn more about current clinical trials related to Huntington’s disease, please email TRICoordinators@uams.edu or AVBoddu@uams.edu.
“Speech-language pathologists may be able to identify the swallowing strategies necessary for patients to continue swallowing safely,” Williams said.