What is the HSG?

The Huntington Study Group (HSG), which was formed in 1993, is the world’s first HD cooperative therapeutic research organization. Today, HSG is a world leader in facilitating high quality clinical research trials and studies that bring us closer to finding more effective treatments for HD and reducing the burden of HD for families affected by the disease.

HSG is an organization of compassionate professionals dedicated to finding treatments that make a difference, providing rigorous care initiatives, and improving the quality of life and outcomes for HD families. How? By bringing together families, medical professionals, clinical researchers, HD advocacy groups, and sponsors to raise awareness of HD, share knowledge and best practices, and develop innovative treatments.

Our VISION is to be an invaluable research partner to Families, HSG Members, Sponsors, and Partners. 

Our MISSION is to seek treatments that make a difference.

Our NETWORK is made up of Families, HSG Members, Sponsors, and Partners.

Families: Individuals affected by HD and their families and caregivers, HD organizations and volunteers around the world participating in the development of innovative HD treatments through participation in clinical trials, education, advocacy, awareness, and care.

HSG Members: An interdisciplinary network of healthcare providers including HSG Credentialed Research Site investigators and coordinators, nursing and medical staff, and researchers and clinicians from a wide range of disciplines. They are members of academic institutions that contribute to the advancement of HD research and/or care and are committed to seeking HD treatments that make a difference.

Sponsors & Partners: Partnering organizations including pharmaceutical companies, CROs, foundations, and government agencies committed to advancing therapies for HD.

Our Leadership comprises elected Board of Directors and a diverse Executive Committee, who provide guidance, direction and oversight of HSG’s research projects and activities.

Our Accomplishments: The Huntington Study Group (HSG) has conducted more than 30 clinical trials and studies since its founding in 1993. HSG developed the Unified Huntington’s Disease Rating Scale (UHDRS®), an invaluable research tool that provides a uniform assessment of the clinical features and course of HD. More recently, HSG conducted trials that led to the first two, and to-date, only, FDA-approved drugs (tetrabenazine and deutetrabenezine) for the treatment of chorea in HD.