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The Neuro Center's physician newsletter. Click here to go to Neurogram's
home page.
Huntingon's Society Names UVa Program a Center of Excellence
In March 2000, the University of Virginia Huntington's
Disease Program was named a Center of Excellence for the care
of patients with HD and their families by the Huntington's Disease
Society of America. The UVa HD Program is one of 10 HDSA Centers
of Excellence in the nation and the only one in Virginia.
An estimated 30,000 Americans have HD, a genetic, degenerative
brain disorder that causes involuntary movements, impaired thinking
and memory and personality changes. An additional 150,000 people
are at risk of inheriting the disease from an affected parent. Although
there is no cure yet available, medications and supportive therapies
can help control symptoms and maintain independence.
- The Program
- The UVa HD Program uses a multidisciplinary
approach to managing the symptoms of HD. Our HD Clinic is staffed by a
neurologist, psychiatrist, neuro-psychologist, physical therapist,
occupational therapist, speech pathologist, genetic counselor and social
worker. Each monthly clinical meeting begins with a patient-education
presentation, followed by separate support group meetings for patients
and family members. In addition to its clinical services, the UVa HD
Program is a participating member of the Huntington's Study Group, a
multicenter consortium of academic centers studying potential treatments
for HD.
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- Genetic Testing
- A direct DNA test is available to confirm the
diagnosis in symptomatic patients. It is also available for those
at-risk family members who wish to learn whether they have inherited the
condition. The UVa Predictive Testing Program follows the guidelines
recommended by the HDSA and endorsed by academic centers and testing
laboratories nationwide. The program involves pre- and post-test
counseling, as well as neurological and neuropsychological evaluations.
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- Award Benefits Patients
- Huntington's Disease is a rare disorder and most physicians
have never cared for a patient with the disease. The multidisciplinary
HD Clinic at UVa draws patients from hundreds of miles away; in
fact, more than 100 patients have been seen since the clinic opened
in 1996. The Center of Excellence award will allow the program
to extend services to patients unable to travel to Charlottesville
through collaboration with the UVa Telemedicine Program and existing
satellite clinics. In addition, an expanded educational program
for patients, families and professionals caring for individuals
with HD is planned.
For more information about the UVa HD Program, please contact:
- Neurology:
- Madaline
Harrison, M.D. (434) 924-5568
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- Genetics:
- Thaddeus
E. Kelly, M.D., Ph.D.
- Patricia S. Allinson, M.S. (434) 924-2665
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