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U.VA. HUNTINGTON'S PROGRAM NAMED CENTER OF EXCELLENCE

The University of Virginia Health System's Huntington's Disease program has been named a Center of Excellence for the care of patients and families affected by the disease. The designation, one of ten in the country, was given by the Huntington's Disease Society of America (HDSA).

U.Va.'s program uses a multidisciplinary approach to managing the symptoms of Huntington's Disease. In the Huntington's Disease clinic, appointments are available with a neurologist, psychiatrist, neuro-psychologist, physical therapist, occupational therapist, speech pathologist, genetic counselor and social worker. The monthly multidisciplinary clinic begins with a patient education presentation, followed by separate support group meetings for patients and family members.

Huntington's disease is a rare disorder and most physicians have never cared for a patient with the disease. The clinic draws patients from hundreds of miles away. Over 100 patients have been seen since we opened in 1996, said Dr. Madaline Harrison, associate professor of neurology. Although there is no cure available yet, medications and supportive therapies can help control symptoms and maintain independence.

An estimated 30,000 Americans have Huntington's Disease, a genetic, degenerative brain disorder causing 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.

At U.Va., a DNA test is available to confirm the diagnosis of Huntington's in symptomatic patients. The test is also offered to at-risk family members who wish to learn whether they have inherited the condition. The U.Va. Predictive Testing program follows the guidelines recommended by HDSA and endorsed by university hosptials and testing laboratories nationwide. The program involves pre- and post-test counseling as well as neurological and neuropsychological evaluations.

This award will allow for an expanded educational program for patients, families and professionals caring for individuals with Huntington's Disease. We also plan to extend program services to patients unable to travel to Charlottesville through collaboration with U.Va. Telemedicine and the existing satellite clinic program, Harrison said.

In addition to these clinical services, U.Va. is part of the Huntington's Study Group, a multicenter consortium of academic centers studying potential treatments for the disease.

For more information about the Huntington's Disease program, please contact Dr. Madaline Harrison at (804) 924-5568.

May 2, 2000