WASHINGTON — Georgetown University Medical Center in collaboration with MedStar Georgetown University Hospital announce the launch of the Huntington Disease Care, Education and Research Center. With support from the Griffin Foundation, the Huntington Disease Center is the first comprehensive, multidisciplinary center to focus on treatment, patient education and research of the disease in the Washington, D.C. area.
Huntington disease (HD) is a hereditary, progressively degenerative brain disorder for which there is no cure, and only one approved treatment for symptoms. HD causes involuntary body movements, cognitive decline, and a host of behavioral disturbances that slowly diminish the ability to walk, talk and reason. Treatment of a person with HD involves a skilled clinical team to make an accurate diagnosis and provide comprehensive care. About 30,000 people in the United States have HD and about 150,000 individuals carry a 50 percent risk of having inherited the fatal HD gene.
“Caring for those with Huntington disease and their families takes a comprehensive and tailored approach,” explains MedStar Georgetown University Hospital President Richard Goldberg, MD. “MedStar Georgetown and Georgetown University Medical Center are assembling a team of specialized neurologists, psychiatrists, social workers and other specialists as a part of the new Huntington Disease Center. Up until now, people with HD have been underserved in the Washington, DC area. This Center changes that.”
The joint endeavor will be lead by GUMC’s Ira Shoulson, M.D., who will serve as interim director of the Center. Shoulson, a professor in the Department of Neurology, is a leading researcher in Huntington disease and founder of the Huntington Study Group, an international academic consortium of clinical researchers.
There will be two clinical co-directors of the Center representing the critical collaboration necessary of neurology and psychiatry in caring for patients and their families. They are Fahd Amjad, M.D., an assistant professor in theDepartment of Neurology and a member of MedStar GUH’s Movement Disorders Program; and Thomas Cummings, M.D., an assistant professor in the Department of Psychiatry.
“Huntington disease is devastating for entire families emotionally, socially and economically,” says Howard J. Federoff, M.D., Ph.D., executive vice president for health sciences at Georgetown University Medical Center (GUMC) and executive dean of Georgetown’s School of Medicine. “Delivering comprehensive care, or cura personalis — care of the whole person, is central to the mission of the new Center. It will also give considerable focus on research to discover new approaches to both treat the symptoms and slow the progression of the disease.”
Recognizing the multidisciplinary, collaborative effort needed for a successful care and research program for Huntington disease, MedStar GUH and GUMC marked the launch of the Huntington Disease Center with an inaugural symposium that assembled some of the nation’s leading experts in care, education and research of Huntington disease.
Through the funding of Huntington Disease Center, the Griffin Foundation hopes to assist in the creation of a model center for the care of Huntington disease patients that provides the clinical support, education and services desperately needed by families and caregivers in the Washington, D.C. area.
In addition to the MedStar GUH location, the Huntington Care, Education and Research Center plans to establish two community-based clinics in Virginia and Maryland to improve access and reduce travel time and inconvenience faced by those with Huntington disease.
Source: Georgetown University