HSG Overview

What is the Huntington Study Group (HSG)?

The Huntington Study Group (HSG) is a non-profit group of clinical investigators 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 (HD). The HSG was formed in 1993, prompted by the recognition that clinical research in HD required the participation of large numbers of research participants under the cooperative effort of skilled and experienced research physicians.

The HSG aims to advance knowledge about the cause, 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 HSG investigators and
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. The HSG Executive Committee currently includes: Ira Shoulson, MD (Chair); Steve Hersch, MD, PhD (Co-Chair); Jody Corey-Bloom, MD, PhD, Ray Dorsey, MD, MBA (Director, HSG Coordination Center); Tatiana Foroud, PhD (Chair, HSG Bioethics Review Committee); Blair Leavitt, MD; David Oakes, PhD (Director, HSG Biostatistics Center); Christine O'Neill; Vicki Wheelock, MD; Anne Young, MD, PhD (Chair, HSG Scientific Review Committee); Shari Kinel, JD (Executive Director); Elise Kayson, MS, RNC (HSG Head Project Coordinator).

Where are the HSG and its members located?

The HSG and its members are located in the US, Canada, Europe, Australia, New Zealand and South America. Please see the HSG Research Sites page.

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 390 active investigators, coordinators and scientists from approximately 80 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.

HSG Administrative Office

The HSG central operating office is located at the institution of the chair (Ira Shoulson, MD):
University of Rochester
1351 Mt. Hope Ave, Suite 223
Rochester, NY 14620
Shari Kinel, JD, serves as HSG Executive Director and Elise Kayson, MS, RNC, serves as HSG Head Study Coordinator.

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 (scientific directors: Karl Kieburtz, MD, and Bernard Ravina, MD) 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.


Home Clinical Research Clinical Trials/Observational Studies in Progress 2CARE COHORT CREST-E DIMOND HART HORIZON PHAROS PREDICT-HD PREQUEL RESPOND-HD Completed Clinical Trials HSG Research Sites Request for Proposals About Us HSG Overview HSG Executive Committee HSG Working Groups Standing HSG Committees Becoming an HSG Research Site Education Resources Login FAQ's Clinical Care UHDRS Links Publications News & Events Events & Upcoming Meetings PSG/HSG Symposium Huntington Disease Clinical Research Symposium Giving Contact Us	What is the Huntington Study Group (HSG)? The Huntington Study Group (HSG) is a non-profit group of clinical investigators 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 (HD). The HSG was formed in 1993, prompted by the recognition that clinical research in HD required the participation of large numbers of research participants under the cooperative effort of skilled and experienced research physicians. The HSG aims to advance knowledge about the cause, 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 HSG investigators and 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. The HSG Executive Committee currently includes: Ira Shoulson, MD (Chair); Steve Hersch, MD, PhD (Co-Chair); Jody Corey-Bloom, MD, PhD, Ray Dorsey, MD, MBA (Director, HSG Coordination Center); Tatiana Foroud, PhD (Chair, HSG Bioethics Review Committee); Blair Leavitt, MD; David Oakes, PhD (Director, HSG Biostatistics Center); Christine O'Neill; Vicki Wheelock, MD; Anne Young, MD, PhD (Chair, HSG Scientific Review Committee); Shari Kinel, JD (Executive Director); Elise Kayson, MS, RNC (HSG Head Project Coordinator). Where are the HSG and its members located? The HSG and its members are located in the US, Canada, Europe, Australia, New Zealand and South America. Please see the HSG Research Sites page. 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 390 active investigators, coordinators and scientists from approximately 80 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. HSG Administrative Office The HSG central operating office is located at the institution of the chair (Ira Shoulson, MD): University of Rochester 1351 Mt. Hope Ave, Suite 223 Rochester, NY 14620 Shari Kinel, JD, serves as HSG Executive Director and Elise Kayson, MS, RNC, serves as HSG Head Study Coordinator. 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 (scientific directors: Karl Kieburtz, MD, and Bernard Ravina, MD) 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 Constitution and Bylaws (November 2003) 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)