The Huntington’s Disease Society of America(HDSA) has designated the Huntington Disease Care, Education and Research Center at Georgetown as an HDSA Center of Excellence for 2016. The designation comes with a grant to support services for Huntington disease patients and their families at the center, a collaboration between Georgetown University Medical Center (GUMC) and MedStar Georgetown University Hospital with generous support from the Griffin Foundation.
The Huntington Disease Care, Education and Research Center opened in 2012, making it the first comprehensive, multidisciplinary center in the Washington area to focus on treatment, patient education and research for Huntington disease. Karen E. Anderson, MD, was named director of the center in 2013.
“We are thrilled to be designated a Center of Excellence. This designation will promote our high quality of care and research to Huntington Disease families in the region, since the HDSA is so widely recognized in the community,” says Anderson, a neuropsychiatrist with dual appointments in the departments of psychiatry and neurology.
Huntington disease is a hereditary, progressively degenerative brain disorder for which there is no cure. Symptoms include involuntary movements, cognitive decline and emotional disturbances that slowly diminish the ability to walk, talk and reason. Treating people with Huntington disease requires a skilled clinical team to make an accurate diagnosis and provide comprehensive care.
According to the HDSA, the goal of the Center of Excellence program is to increase access to the best possible multidisciplinary clinical care and services for individuals affected by Huntington disease. In addition to clinical and social services, the centers provide professional and lay education in the geographic areas they serve, and are involved in clinical research and work with HDSA locally and nationally in its efforts to continually improve the lives of patients and families affected by Huntington disease.
“Our Georgetown Huntington disease center expanded quickly outside of Washington, so we could offer comprehensive services for patients and their families in Maryland and Virginia, too,” says Carlo Tornatore, MD, chair of neurology at MedStar Georgetown and professor of neurology at Georgetown School of Medicine. “All three centers host multiple services provided by a social worker, neurologist, neuropsychiatrist, neuropsychologist, genetic counselor, speech therapist and occupational therapist. Patients also have access to clinical trials for emerging therapies.”
The vast array of expertise is fostered by the collaboration between the hospital and the university.
“Early on, we wanted the center to be built on a foundation bridging two major care needs of families coping with Huntington disease — psychiatric and neurologic,” explains Steven A. Epstein, MD, chair of psychiatry at MedStar Georgetown and professor of psychiatry at Georgetown’s School of Medicine. “The team has done that, and with added additional support services, our center is an exceptional model for Huntington disease centers across the nation. We are proud to have the HDSA designation.”
Clinical research and access to the latest therapies are additional strengths of the center.
“Our center is a clear example of how patients benefit directly from a strong collaboration between a research enterprise, like the medical center, and the hospital,” says Edward Healton, MD, MPH, Georgetown University’s Executive Vice President for Health Sciences and Executive Dean of the medical school. “Our families have access to the latest therapies being studied to treat Huntington disease, in addition to a tremendously experienced support team.”
Recognizing that Huntington’s is a family disease, the Huntington Disease Care, Education and Research Center focuses on providing care for patients and support for their families. As an extension of Georgetown University Medical Center’s dedication to cura personalis — care of the whole person — the center strives to provide cura familia, or care of the whole family.
“All this is possible because of the initial generous gift from the Griffin Foundation to establish the Center,” Anderson says.
“Experts have noted that better patient outcomes are linked to coordinated patient care and clinical research, which can result in better treatments,” Griffin says. “The Huntington Disease Center of Excellence at MedStar Georgetown will help in finding better treatments while delivering needed and better care for patients and families in our region today.”
To learn more about the Huntington Disease Care, Education and Research Center at Georgetown, please call (202) 444-0816 or email firstname.lastname@example.org.