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HDSA Centers of Excellence

About the Center of Excellence

Mass General was designated as one of the first Huntington’s Disease Society of America Centers of Excellence, recognizing our commitment to excellence in both comprehensive clinical care and innovative clinical and basic science research.

About Huntington's Disease

Huntington’s disease is a fatal genetic condition that causes progressive loss of brain cells; these changes cause involuntary movements, changes in thinking, changes in mood and difficulties with voluntary movements and gait. Symptoms usually appear between the ages of 30 and 50 years of age, although symptoms can occur in people who are younger or older. Even within the same family, the age of onset and symptoms can vary considerably.

Children of a parent with HD have a 50 percent change of inheriting the gene that causes the disease. A person who inherits the gene that causes HD will develop symptoms of HD at some point in their lives. Denial of having HD is very common, but it is important to get checked if someone might have some concerns about early changes.

Symptoms can include:

  • Personality changes, mood swings & depression
  • Forgetfulness & impaired judgment
  • Unsteady gait & involuntary movements (chorea)
  • Slurred speech, difficulty in swallowing & significant weight loss
Although there is no cure, there are effective treatments for many of the symptoms. Early intervention is very important.

Huntington's Disease Clinic

The MGH Huntington’s Disease Clinic is recognized as a Huntington’s Disease Society of Amerrica (HDSA) Center of Excellence for our expertise and multi-pronged approach to the care of patietns and families with Huntington’s disease. It is one of the largest in the country. It provides both multi-disciplinary clinical care to patients as well as access to clinical translational and clinical trials research of emerging novel therapies for HD.

What to expect at your clinic visit

Dr. Penney was amazingly caring and was focused on the situation at hand. She gave me a clear explanation of the next steps going forward with my plan of care. I feel blessed to have her as one of my care providers.

– Patient in the Huntington's Disease Clinic

Clinical Research Opportunities

Gaining new knowledge about Huntington’s disease is critical to developing new effective treatments that could prevent the onset of symptoms or slow the progression of disease. The path to discovery is through research. The HD Clinic provides people with HD and their family members an opportunity to participate in research. We are involved in both observational studies (studies that do not require that a study drug be taken, but that provide valuable information about HD onset and HD progression) and interventional clinical trials (studies of new potential treatments that involve taking an experimental medication).

Clinical trial basics

At each clinic, members of the research team are available to talk about the current research and answer questions about eligibility. You can also contact them directly:

Hannah Robins: 617-726-2042 or herobins@mgh.harvard.edu
Ashley Loh: 617-724-2227 or aloh1@mgh.harvard.edu

Current Interventional Clinical Trials
A Phase 3, Randomized, Double-Blind, Placebo-Controlled Study to Assess the Efficacy, Safety, and Tolerability of Valbenazine for the Treatment of Chorea Associated with Huntington’s Disease
Valbenazine (valbenazine tosylate, NBI-98854) is a selective, orally active VMAT2 inhibitor developed by Neurocrine Biosciences, Inc. that is being investigated for the treatment of chorea associated with Huntington disease (HD). The study drug, valbenazine, has been approved by the United States Food and Drug Administration (FDA) in April 2017 for the treatment of adults with tardive dyskinesia (TD), under the trade name INGREZZA®.
A Phase 3, Randomized, Double-Blind, Placebo Controlled, Parallel Arm, Multicenter Study Evaluating the Efficacy and Safety of Pridopidine in Patients with Early Stage of Huntington Disease
Pridopidine, the study drug being investigated in PROOF-HD, is a small molecule which may help to slow functional decline in patients with early HD. In this research study, participants will undergo a screening visit and then if enrolled will be followed for approximately 65-76 weeks by the study doctor. Participants who complete the main study of double-blinded treatment may then be offered the option to enroll into the open label extension study.
Current Observational Studies
Enroll-HD: A Prospective Registry Study in a Global Huntington’s Disease Cohort
This study is a global observational study that aims to learn more about how HD appears and changes over time in different people. Patients with HD, people who are at-risk or pre-symptomatic, or community controls are invited to join this study.
SPECTRUM: Learning from Huntington’s Disease Extremes
This study aims to examine both younger and older patients to attempt to find biologic differences that explain the differences in HD onset and progression.
Investigation of Inflammatory Biomarkers in Neurodegenerative Disease
This study examines to explore the relationship between the human gut and the brain.
Novel Biomarkers in Huntington's Disease
The purpose of this study is to better understand the changes that occur in the blood of people that have HD and how these changes are different from normal aging or other diseases that affect the nervous system.
Evaluating White Matter Disruption in Huntington's Disease
This study is testing advanced Magnetic Resonance Imaging (MRl) methods to understand how relationships between are altered in HD. We are recruiting healthy controls and gene-positive/people with HD.
AAN-Structural and Functional Alterations in Normal Aging, Alzheimer's and Other Neurodegenerative Disorders
This study explores the changes that occur over time in the structure of the brain, in brain connections and the changes in function as a result of disease and disease progression.
Martinostat: Investigation of Epigenetic Mechanisms in Huntington's Disease Patients

Our Team

Our Team

Meet the care team at the Mass General Huntington's Disease Clinic.

Patient and Family Resources

Patient and Family Resources

Find resources and assistance for patients and families.

What to Expect at The Clinic

What to Expect at The Clinic

What will happen during your visit to the Huntington's Disease Clinic.