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Project

Huntington's Disease Center

Center:
Fiscal Year:
2007
Contact Information:
Project Description:
The purpose of the Huntington?s Disease Center is to provide diagnosis, evaluation, genetic counseling, social services, and long-term management to families with Huntington?s Disease (HD). The center also serves a training site for students, residents and fellows, is a resource for clinical research, and engages in community outreach activities to support HD families. The ability to directly test for HD has only been possible since 1993 and the condition has no known cure. The clinical services offered through the Huntington?s Disease Center provide opportunities to improve the long-term management of the condition and facilitate research projects to increase understanding of the causes and potential treatments of HD. More than 520 families have been diagnosed with HD at our center to date. The center is staffed by a neurologist, genetic counselors, a medical social worker, and nurse specialist. Additional consultation services including physical therapy, occupational therapy, speech and swallowing, and psychiatry are provided as needed. Beyond clinical services, our center maintains relationships with other community organizations that provide services for HD families, organizes a bi-annual public symposium on HD, and coordinates on-site training opportunities.
Keyword(s):
Core Function(s):
Training Trainees, Developing & Disseminating Information
Area of Emphasis
Quality Assurance, Health-Related Activities
Target Audience:
Students/Trainees (long or intermediate trainees), Professionals and Para-Professionals, Family Members/Caregivers, Children/Adolescents with Disabilities/SHCN
Unserved or Under-served Populations:
Specific Groups
Primary Target Audience Geographic Descriptor:
State
Funding Source:
COVID-19 Related Data:
N/A