The Huntington Study Group (HSG) is a Huntington’s disease focused boutique CRO that conducts clinical trials and provides programs that impact research and care.

Stay tuned for updates on HSG’s 30th Annual Meeting in 2023!

HSG Services and Offerings

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The mission of the Huntington Study Group is to seek effective treatments that improve the quality of life for people affected by Huntington’s disease.The HSG conducted the clinical trials that led to the very first two and, as of 2021, only FDA-approved treatments for HD symptoms.

The HSG has conducted more than 35 clinical studies and trials in HD since our founding over 25 years ago.

The HSG began the first and largest global observational study of HD patients, COHORT, which evolved into the current ENROLL-HD.

The HSG has helped train nearly 1,000 healthcare professionals and care providers through our in-person and online education programs on Huntington’s disease.
The HSG network includes over 800 members from among the world’s best and most dedicated HD professionals – clinical investigators & coordinators, neurologists, psychiatrists, nurses, therapists, dietitians, social workers, and genetic counselors who want to make a difference in the quality of life of individuals with HD and their families.


The HSG was founded in 1993 by Dr. Ira Shoulson and several colleagues at the University of Rochester. They believed the best way to combat this rare disease was to bring together all the researchers, experts, clinicians, and patients under one roof, to work together more effectively with industry, foundations, government agencies, and other partners to design controlled trials and studies in Huntington disease. In the quarter-century since, the HSG has conducted more clinical trials and studies exclusively focused in Huntington disease than any other organization.