Huntington's Disease Unit
Huntington's Disease Unit
Wang Ambulatory Care Center
15 Parkman Street, 8th Floor, Suite 835
Boston, MA 02114
Huntington’s Disease Unit
Mailcode: WACC 8-835
Massachusetts General Hospital
55 Fruit Street
Boston, MA 02114
Clinical Research Coordinator Phone: 617-726-9045
Explore This Treatment Program
Massachusetts General Hospital is one of the few hospitals in the country to have two physicians specializing in Huntington's disease and who are also world leaders in HD research:
Our clinic serves patients throughout New England, and more widely across the United States and around the world and draws an exceptional number of HD families. Our team is known for its experience and quality in diagnosing, evaluating and treating patients with Huntington's disease.
The Mass General HD Unit is also a leader in clinical research for HD and many of our patients eagerly participate in clinical trials that offer access to the latest therapies and treatment approaches. To learn about participating in these studies, please call 617-726-9045.
Care for All Disease Stages
Although there currently is no cure for Huntington’s disease, many of the symptoms that occur can be lessened through treatments and therapies. The burdens of HD on families can be reduced. Experimental treatments that could slow the progression of HD are in clinical trials.
Patients may receive:
- Medications for treating mood and behavior difficulties
- Medications to relieve abnormal movements
- Psychotherapy for emotional and behavioral issues
- Genetic counseling and testing
- Occupational and physical therapies to help control of voluntary movements and optimize physical function
- Speech therapy for patients struggling with speech and swallowing issues
- Nutrition consultation to help maintain optimal metabolism
- Referral to support groups and other community resources
- Inpatient hospitalization for acute medical or behavioral problems
- On-site social work consultation for emotional support and referral to community resources
- Assistance with transitions to long term care, when needed
- Regular follow-up is helpful in reducing symptoms, optimizing the quality of life, and staying abreast with advances in research
The Huntington's Unit is one of four entities comprising the Mass General Movement Disorders Unit. Our hospital has a long history of conducting research into Huntington's disease and caring for patients with this and other movement disorders. Pioneering studies defining the neuropathology of HD were published in the 1970’s and 1980’s. In 1983 Mass General's James Gusella, PhD led a team that identified the location of the Huntington's gene, an accomplishment that ushered in the modern era of genetics research. Ten years later, Mass General scientists, working as part of a collaborative group, found the Huntington's gene mutation. This discovery led to the creation of the genetic test that allows people to find out if they carry the abnormal Huntington's gene. Today, Mass General scientists are working on understanding how HD affects the brain, on identifying possible treatment targets, on testing possible therapies in HD animal models, on applying what is learned in the lab to develop treatments that can be tested in individuals with HD, and on developing clinical, neuroimaging, and biochemical measures for monitoring the progression of HD and responses to treatments.
Steven Hersch, MD, PhD, the director of the HD Center, is co-chair of the Huntington Study Group, founded the HDSA’s Center of Excellence program, and leads laboratory and clinical research efforts aimed at finding treatments, H. Diana Rosas, MD, Center co-director, leads a world-leading neuroimaging laboratory related to HD and conducts most of the HD clinical trials at Mass General. Dr. Anne B. Young, formerly the Chief of Neurology, is a world-renowned expert in Huntington's disease and Parkinson's disease. Dr. Young retired in April of 2012 and is now vigorously pursuing her research interests in neurodegenerative diseases.
What to Expect
New patients undergo a comprehensive evaluation that is tailored to their specific needs. Assessments are led by the treating neurologist but can involve genetic counseling, social services, physical therapy, occupational therapy, speech therapy and nutrition services as needed. Patients and their referring physicians receive an individualized treatment plan and recommendations for follow-up care. Options for participation in clinical research studies may also be discussed. In addition, we can make referrals to other specialists in Mass General for further testing or treatment when appropriate.
Genetic Counseling and Testing
Huntington's disease is an inherited disorder, and genetic testing can determine if the genetic mutation that causes Huntington's disease is present. Tests take place through the Mass General Neurogenetics DNA Diagnostic Laboratory. For individuals at risk for Huntington's disease, predictive genetic testing may help with making informed decisions about issues such as family planning. (These records are kept confidential in accordance with HIPAA law and the privacy policies of Mass General.) The testing process, conducted by Dr. Rick Myers and Judith Sinsheimer, MSW, LICSW, includes genetic counseling and a psychological assessment. Those undergoing testing should select a support person to participate in the process. Test results are delivered in person, and follow-up care is available as needed. For patients who have symptoms, genetic testing helps to ensure an accurate diagnosis.
Basic Science & Clinical Research
The Huntington's Unit is dedicated to finding new treatments, new ways to improve patient care and, ultimately, a cure for Huntington's disease and related disorders. Besides seeing patients, our physicians are active in both basic science and clinical research efforts. This synergy ensures our team always stays abreast of the latest scientific developments in our arena.
Our basic science research takes place at the MassGeneral Institute for Neurodegenerative Disease (MIND). This collaborative research institute aims to translate laboratory discoveries into prevention, treatment and cures for Huntington's disease and other neurodegenerative diseases.
In addition, we are fully engaged in a wide range of clinical research, including testing new drugs and managing studies to improve diagnosis and management of Huntington's disease. We offer studies for people diagnosed with Huntington's disease and for those at risk of developing the disease due to family history.
For information about enrolling in these studies or making plans for brain donation for Huntington's disease research, please call 617-726-9045.
Support Our Work
Philanthropic support for the Mass General Department of Neurology is critical to patient care, research and education. Please consider a gift to support neurology research and clinical care today.