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What is the Huntington Study Group (HSG)?

The Huntington Study Group (HSG) is a non-profit group of physicians and other health care providers from medical centers in the United States, Canada, Europe, Australia, New Zealand and South America, experienced in the care of Huntington patients and dedicated to clinical research of Huntington disease. The HSG was formed in 1993, prompted by the recognition that clinical research in Huntington disease (HD) required the participation of large numbers of research patients (subjects) under the cooperative care of skilled and experienced research physicians.

The HSG aims to advance knowledge about the cause(s), disease progression and treatment of HD and related disorders. The HSG is committed to:

  • Open communication within the scientific community

  • Full disclosure of research results in scientific journals after independent expert review

  • Revealing all potential conflicts of interest of the group and each HSG member

  • Democratic governance of its organizations and activities

 

What has the HSG Accomplished?

The HSG has carried out cooperative therapeutic research since 1993, beginning with the development of the Unified Huntington's Disease Rating Scale (UHDRS) and the Natural History database. Since then we have carried out several multi-center clinical research studies to examine the short-term symptomatic and potential disease-modifying effects of experimental interventions in Huntington disease as well as large observational studies.

The HSG has partnered with pharmaceutical companies, private foundations, the National Institutes of Health (NIH) and the FDA Orphan Drug Products Division in developing and conducting these trials.

Since our inception, we have published all of our research projects in internationally recognized peer-reviewed journals in an effort to make public all of our research progress in HD. Our publication list currently includes journal articles, abstracts, reports, releases and position papers.

 

How is the HSG governed and organized?

The HSG is governed by a constitution and bylaws and an elected Executive Committee which is primarily responsible for the direction and oversight of its research projects and activities.

 

Where are the HSG and its members located?

HSG Network

The HSG includes a network of experienced investigators, coordinators and consultants from academic/research institutions in the United States, Canada, Europe, Australia, New Zealand and South America. Membership in the HSG is based on active participation in HSG clinical trials, and participation in working groups and committees of the HSG.

The HSG now includes more than 500 active investigators, coordinators, and scientists from over 100 HSG sites located throughout the United States, Canada, Europe, Australia, New Zealand, and South America. Research is conducted at all of these sites in an effort to find new treatments (e.g., medications, surgical procedures) for HD, as well as new ways to diagnose HD and related neurological disorders. Site investigators and coordinators are selected for participation in HSG trials on the basis of their experience and performance in conducting clinical research studies in Huntington disease.


Meet the Huntington Study Group

HSG Executive Committee

HSG Staff

HSG Research Sites 

HSG Standing Committees

HSG Working Groups

HSG Publications


Join the Huntington Study Group:

Become an HSG Research Site