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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 approximately 90 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.

 

Who coordinates the research activities and analyzes the data?

Clinical Trials Coordination Center

The HSG Clinical Trials Coordination Center (CTCC) at the University of Rochester is responsible for the overall coordination of the research activities, including data management of clinical trial databases. The Coordination Center is supported by Cynthia Casaceli (director). About 60 staff members, including postdoctoral fellows in experimental therapeutics, are involved in the implementation of study protocols, site communications, and data management.

 

Biostatistics Center

The HSG Biostatistics Center, directed by David Oakes, PhD, is comprised of faculty from the Department of Biostatistics Computational Biology at the University of Rochester. Michael McDermott, PhD and Chris Beck, PhD assist as biostatisticians for HSG trials. Biostatistics for the University of Iowa (Douglas Langbehn, MD, PhD) and Columbia (Bruce Levin, PhD) help oversee the conduct and review of HSG studies. At the University of Rochester, an 11-member faculty, three postdoctoral fellows, and a group of 12 programmers and research associates are responsible for the analysis of all HSG databases. Like the Clinical Trials Coordination Center, the Biostatistics Center participates in the training of pre- and postdoctoral students interested in controlled clinical trials.

Related Documents
HSG Policy Statement on Publication and Conflict of Interest Pertaining to Clinical Research Involving Persons with Huntington’s Disease (HD) (October 2002)
HSG Policy for Storage and Use of Biological Human Research Samples (April 2001)
HSG Policy on Non-Disclosure of CAG Trinucleotide Repeat Length (CAGn) Genetic (DNA) Information (February 10, 1995)


Meet the Huntington Study Group

HSG Executive Committee

HSG Staff

HSG Research Sites 

HSG Standing Committees

HSG Working Groups

HSG Constitution & Bylaws

HSG Publications


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