Department of Neurology, Perelman School of Medicine, The University of Pennsylvania, Philadelphia, PA, USA
Dan Aaron Parkinson’s Disease Rehabilitation Center, University of Pennsylvania Health System, Pennsylvania Hospital, Philadelphia, PA, USA
Department of Psychiatry, Perelman School of Medicine, The University of Pennsylvania, Philadelphia, PA, USA
Correspondence to: Pedro Gonzalez-Alegre, MD, PhD, Pennsylvania Neurological Institute, 330 S. 9th Street, Philadelphia, PA 19107, USA. E-mail: [email protected].
Note:  These authors contributed equally to this work.
Abstract: Background:Clinical care for Huntington’s disease (HD) is often provided in experienced centers that provide multidisciplinary care. However, the value of these centers and their uptake by HD families remain unknown. Objective:To describe the services provided by a new HD center, including estimates of capture of the population served. Methods:Retrospective review of a HD Center launched in 2015, including quantitative and qualitative data on clinic visits, demographic and clinical data. Results:We observed a rapid and ongoing growth on the annual number of clinic encounters, with high demand for in-clinic multidisciplinary care. Using census data and estimates of HD prevalence, we determined that we served about 20% of local patients with HD. Most HD patients received pharmacological treatment for psychiatric symptoms, and over half were treated for chorea. About 25% of new HD diagnoses were on patients without family history of HD. Finally, the demand for predictive testing in at risk individuals significantly increased following the press release reporting the successful completion of the Ionis-HTTRx (RG 6042) trial. Conclusions:This report indicates a high demand for multidisciplinary care by HD families, supporting its value, providing a snapshot of the organization and function of a single center. Furthermore, it demonstrates how dissemination of news related to research advances influence clinical behavior. Reporting similar information from other HD centers to would provide us with a more global view of the status of HD care across multiple geographical areas.
Keywords: Multidisciplinary, Huntington’s disease, outcomes, health services