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April 18, 2002

Region's 1st Huntington's clinic established

Pitt has established the region's first Huntington's disease (HD) Clinic. The clinic will offer genetic testing and counseling and conduct research on the disease that affects 30,000 Americans, with as many as 1,500 western Pennsylvanians considered at risk for developing the disease.

A fatal, degenerative brain disorder that primarily strikes men and women between the ages of 30 and 45, Huntington's disease causes involuntary movements, severe emotional disturbance and cognitive decline. As their bodies and minds deteriorate, affected individuals often die from complications such as choking, infection or heart failure.

The clinic will be held 1 – 4 p.m. on the second Wednesday of each month beginning April 10 in 810 Kaufmann Medical Building.

Administratively housed in the Department of Neurology and affiliated with the University of Pittsburgh Institute for Neurological Disorders, the clinic also offer diagnosis; medication for movement disorders; cognitive and psychiatric evaluation and treatment; physical, occupational and speech therapy; caregiver and social services, and nutritional counseling. The center also will be the only one in Pennsylvania to offer clinical trials to HD patients.

Robert Y. Moore, Love Family Professor of Neurology, departments of neurology, psychiatry and neuroscience, is co-director of the clinic with Elizabeth Gettig, assistant professor of human genetics and director of the genetic counseling program in Pitt's public health school.

"Although in 1993 researchers identified the gene that causes this devastating disorder, there is still no cure," Moore said. "There is hope as genetic testing is available for family members of Huntington's patients, and only a handful of specialized clinics in the United States offer treatment and research."

In addition to 30,000 Americans with the disease, another 150,000 are at risk because family members have a 50 percent chance of inheriting Huntington's from an affected parent.

"The personal stories of HD families are compelling," Gettig said. "This is a complex disease involving movement, mood and heredity. Even if you escape the disease yourself, you clearly are not free as brothers and sisters and other loved ones remain at risk for developing HD. The experience of living in an HD family is a powerful one."

The HD clinic will become part of the Huntington's Study Group, a non-profit group of physicians and researchers in the United States, Canada, Europe and Australia that conducts clinical trials of new treatments in HD.

The clinic also will work closely with the Western Pennsylvania Chapter of the Huntington's Disease Society of America located in Pittsburgh.

For information or to make an appointment, contact Gettig at 412/624-3018.

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