The Dystonia Clinic at Massachusetts General Hospital

Massachusetts General Hospital has long been recognized throughout the world as a major center of excellence in treating all forms of dystonia, including XDP.

Clinic Director

Directed by Dr. Nutan Sharma, the Dystonia Clinic at Mass General offers comprehensive treatment plans that help individuals with XDP manage the diverse symptoms associated with this disorder. As a neurologist specializing in movement disorders, Dr. Sharma has more than 25 years of experience caring for patients with different forms of dystonia and parkinsonism. In addition to her work in the clinic, she also serves as an Associate Professor of Neurology at Harvard Medical School and leads the clinical research program for the Collaborative Center for XDP.

Team Approach and Offerings

The Dystonia Clinic is located within the Department of Neurology at Mass General, which includes specialists with broad expertise in other disorders of the nervous system. If we suspect that a patient may have a disease other than XDP, we can refer him or her to another subspecialist within the department for further assessment.

Multidisciplinary Teamwork

The MGH Dystonia Clinic takes a team approach to patient care. Our neurologists regularly collaborate in diagnosing, evaluating, and treating patients with XDP. In order to address all aspects of the patient’s well-being, we may call on colleagues throughout Mass General, including physical therapists, speech therapists, social workers, and psychologists. We strive to develop long-term treatment solutions that allow patients to manage this disorder and lead independent, active lives for as long as possible.

Genetic Testing and Counseling

Genetic testing for XDP is available, and the MGH Dystonia Clinic provides genetic counseling to patients who may be considering this option. Trisha Multhaupt-Buell, MS, LCGC, is a genetic counselor specializing in hereditary forms of dystonia, including XDP. She works with patients who may be contemplating genetic testing for XDP to explain the options and assist them in determining if testing is appropriate for them. Please contact Ms. Multhaupt-Buell at tmulthaupt-buell@mgh.harvard.edu for additional information.

A Full Range of Therapies for Dystonia

XDP can affect many parts of the body, such as the limbs, torso, eyelids, face, neck and/or vocal cords. At present there is no cure, so treatment plans are focused on symptom management to improve the patient’s quality of life and ability to function.

Because each patient may have a unique set of symptoms, we develop individualized treatment plans that may include oral medications, botulinum toxin injections, braces, physical therapy, deep brain stimulation (DBS), or a combination of these treatments.

Training

the Next Generation of XDP Clinicians

Mass General is the oldest and largest of the 12 teaching hospitals that are affiliated with Harvard Medical School, and it has a longstanding mission to train the next generation of clinician-scientists. The Collaborative Center for XDP has continued this tradition by providing training fellowships to movement disorder neurologists interested in XDP clinical care and research.

Dr Jan de Guzman and Dr. Melanie Supnet are recent CCXDP fellows who are now actively involved in our XDP clinical research program.

At Mass General
At our clinic

For more information on current studies, visit Mass General Brigham clinical trials.