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Huntington Disease program

 

Make an appointment

Please call the HD Program Coordinator at (804) 662-5307 to schedule an appointment.

The Huntington Disease (HD) program was established in 2012 by Dr. Claudia Testa; who came to VCU after directing the HDSA Center of Excellence at Emory University. The program offers expert clinical care integrated with clinical research, and offers educational opportunities for the HD community.

Our team of experienced providers is dedicated to providing consultations to meet our patients’ individual needs. We strive to integrate expert clinical care with clinical research to advance knowledge in HD.

Directors


Description: http://www.patientpower.info/images/dmImage/SourceImage/rosenblatt adam 1.jpgClaudia Testa, MD, PhDDr. Claudia Testa, Program Director, is a neurologist with specialized expertise in Huntington Disease clinical care and research. She has spent 14 years caring for those with HD, and is passionate about finding better treatments, and ultimately a cure. Dr. Testa serves on the executive committee of the Huntington Study Group (HSG).

Dr. Adam Rosenblatt, Program Co-Director, is a neuropsychiatrist with extensive experience in research and the treatment of HD. He provides clinical assessments and psychiatric consultations. Dr. Rosenblatt is also a member of the HSG, and directed the Johns Hopkins HDSA Center of Excellence before joining VCU.

Our care team

Our interdisciplinary care team also includes:

  • Genetic Counselor – genetic counseling and genetic testing, including pre-symptomatic
  • Social Worker – available to assist HD Program patients and families
  • Physical Therapist  – evaluates gait and balance in HD
  • Neuropsychologist – cognitive testing
  • Speech Therapist – evaluates voice, communication skills, and swallowing

Through the VCU Medical Center network, our patients may also access nutrition, sleep neurology and other specialists as needed.

Costs

For patients interested in self-pay options, the HD Program Coordinator can provide current cost information for appointments with the neurologist, genetic counseling and/or testing.
For more information, contact Ginger Norris, MGC vwnorris@vcu.edu or (804) 662-5307.

If a patient needs financial assistance, please contact Virginia Coordinated Care Program (VCC) at (804) 628-0600 for screening.  VCC needs to be approved before the appointment.  Please note VCC does not cover genetic testing.

Clinical research

Our clinical research programs are conducted in the same building as clinical appointments. Learn more about our currently enrolling studies.

We are happy to contact any interested HD families with research opportunity updates. We are developing programs for everyone: those with HD, at risk, and family members!  Join our mailing list to learn of the latest opportunities.

For more information, contact Ginger Norris, MGC vwnorris@vcu.edu or (804) 662-5307.

What is Huntington Disease?

Huntington Disease (HD) is an inherited neurodegenerative disease.  HD is most often thought of as a movement disorder, but it also causes emotional and behavioral changes, and cognitive decline.  The symptoms associated with HD usually become more severe over time.  Currently there is not a cure for HD, but there are medications to manage the symptoms.  There are also many other ways to improve a person’s independence and quality of life.

Is Huntington Disease Inherited?

Yes.  HD is caused by a change in a gene and it is passed from a parent to a child.  Every child of an individual who has HD has a 50% chance of inheriting the gene that causes HD and a 50% chance of not inheriting the gene.  HD affects both men and women and all ethnicities.  For people considering learning their personal chance of inheriting HD gene, a consultation with a genetic counselor will be helpful.  Learn more about genetic counseling.

HD care: At risk, pre-symptomatic, symptomatic

Information, clinical care, and research needs differ across the spectrum of HD. Our team will work with you and your family to find the right fit for your needs.

At risk:
At risk individuals may connect with the HD Program through genetic counseling. Genetic counseling does not obligate a person to go forward with genetic testing. If the individual chooses, our program can provide genetic testing. Information on family planning, HD advocacy, and HD research are examples of areas that may be relevant for someone living at risk for HD.

Pre-symptomatic:
For someone with the HD gene mutation who is pre-symptomatic, a neurological assessment may provide a helpful baseline, along with further assessments by psychiatry or neuropsychology if additional information is needed. Some pre-symptomatic individuals may not require clinical evaluation, such as those individuals focused on gathering information for family members, or finding ways to participate in research.

Symptomatic:
Our program cares for people with adult onset or juvenile onset HD. Dr. Testa and Dr. Rosenblatt will provide initial care assessments. Ongoing follow-up care will be provided as needed with consults from interdisciplinary team members to meet individual needs. Research and education about HD for family members and the community are key information areas for symptomatic individuals.

HD Resources

Patient care

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