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

HSG Services and Offerings

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Our Mission:
To accelerate treatments that make a difference for Huntington’s disease

Our Vision:

The HSG network includes over thousands of 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.

We have conducted the clinical trials that led to the first and only two FDA-approved treatments for HD symptoms. The HSG has conducted 40 clinical studies and trials in HD since our founding 30 years ago as well as beginning the first and largest global observational study of HD patients, COHORT, which evolved into the current ENROLL-HD.

To date, we have helped train thousands of healthcare professionals and care providers through our in-person and online education programs on Huntington’s disease.


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 decades since, the HSG has conducted more clinical trials and studies exclusively focused on Huntington’s disease than any other organization in the world.


Our extensive experience in conducting clinical trials in HD, our deep understanding of the disease and its impact on participants and caregivers, our longstanding relationships with experts and research sites, and our strategic structure uniquely positions us to be the premier Clinical Research Organization (CRO) partner in the pursuit to develop treatments for this devastating disease.

For 30 years, HSG has established the standards for scientific and therapeutic expertise and high-quality clinical research solely focused on accelerating treatments in Huntington’s disease. HSG has built concrete relationships and credibility with key stakeholders in HD, including participants, caregivers, and research sites, and we deeply comprehend their needs and perspectives. HSG leverages our expertise, operational excellence, and longstanding relationships to collaboratively ensure trials are conducted to the highest standards including data integrity, patient safety, and accountability.


HSG has developed an innovative, novel approach to conducting efficient, successful, and compliant clinical trials. Our methodology has been consistently proven across 40 HSG studies in HD which were completed on time or ahead of schedule, on budget, and with data integrity. Through the expert conduct of two pivotal trials, HSG played a key role in bringing to market the only two FDA-approved drugs for Huntington’s disease.

By selecting HSG as the CRO for a study, our partners benefit from the close relationships we have with site investigators and coordinators, our extensive experience in the treatment of HD, our proven track record of conducting HD clinical trials, and our commitment to accelerating treatments that will make a difference for the HD community.