Huntington Study Group dedicated to patients, research

This article was contributed by:

Ira Shoulson, MD, Chair, HSG Executive Committee
Steve Hersch, MD, PhD, Co-Chair, HSG Executive Committee
Elise Kayson, HSG Head Study Coordinator
Leslie Kieburtz, HSG Director of Communications
Shari Kinel, HSG Executive Director

Special to the Movement Disorder Society

June/July 2009

Huntington disease (HD) is an inherited, degenerative brain disorder leading to a wide variety of symptoms which usually develop gradually, and can go unnoticed for years. Clinical features of HD include involuntary movements, cognitive impairment and psychiatric illness that typically begin in early or middle adulthood.

The Huntington Study Group (HSG) was formed in 1993, prompted by the recognition that clinical research in HD requires a large number of research participants under the cooperative effort of skilled and experienced investigators.

The HSG is a non-profit group of clinical investigators from medical centers in the United States, Canada, Europe and Australasia, experienced in the care of Huntington patients and dedicated to clinical research of Huntington disease (HD). 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, full disclosure of research results in peer-reviewed scientific journals, full disclosure of potential conflicts of interest,  and democratic governance.

The HSG has carried out cooperative therapeutic research for more than 16 years, beginning with the development of the Unified Huntington's Disease Rating Scale (UHDRS) and a natural history database. The HSG has carried out several multi-center clinical research studies to examine the short-term symptomatic and potential disease-modifying effects of experimental interventions in HD as well as several large observational studies.

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

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 current HSG Executive Committee includes: Ira Shoulson, MD (Chair); Steve Hersch, MD, PhD (Co-Chair); Ray Dorsey, MD, MBA (Director, HSG Coordination Center); Richard Dubinsky, MD; 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).

The HSG includes more than 400 active investigators, coordinators and scientists from about 80 HSG sites in the United States, Canada, Europe and Australia. Research is conducted to find new treatments (e.g., medications, surgical procedures) for HD, as well as better ways to detect and assess the clinical emergence and progression of HD.  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 HD and related disorders.  Please see the HSG Research Sites for more detailed HSG site location information.

HSG investigators convene at least annually to plan and implement research projects and to participate in training and educational courses. The Huntington Disease Clinical Research Symposium (HDCRS) is an annual CME-accredited event that provides a forum for presenting the most recent Huntington disease clinical research findings.  The next HDCRS will take place at the Hyatt Regency Baltimore on Saturday, November 21, 2009, and is open to the public (pre-registration is recommended).  Please see 2009 HDCRS for more information.

About Dr. Ira Shoulson

Ira Shoulson, MDIra Shoulson, MD is the Louis C. Lasagna Professor of Experimental Therapeutics and Professor of Neurology, Pharmacology and Medicine at the University of Rochester School of Medicine & Dentistry in Rochester, New York. He received his MD degree (1971) and postdoctoral training in medicine (1971-73) and neurology (1975-77) at the University of Rochester and in experimental therapeutics at the National Institutes of Health (1973-75) and was a Joseph P Kennedy Jr public policy fellow in the US Senate (1990-91).

Dr. Shoulson founded the Parkinson Study Group in 1985 and the Huntington Study Group in 1994 -- international academic consortia devoted to research and development of treatments for Parkinson disease, Huntington disease and related neurodegenerative and neurogenetic disorders. He has served as principal investigator of the National Institutes of Health-sponsored trials "Deprenyl and Tocopherol Antioxidative Therapy of Parkinsonism" (DATATOP), the “Prospective Huntington At Risk Observational Study” (PHAROS), and more than 25 other controlled multi-center studies. He is the Director of the Experimental Therapeutics Program at the University of Rochester Department of Neurology, the chair of the executive committee of the Huntington Study Group, a consultant for the Food and Drug Administration, former member of the National Institute of Neurological Disorders and Stroke Council, past-president of the American Society for Experimental NeuroTherapeutics (ASENT), associate editor of Archives of Neurology and an elected member of the Institute of Medicine of the National Academies. He has authored more than 260 scientific reports.

About Dr. Steven Hersch

Steve Hersch, MD, PhDDr. Hersch is an Associate Professor of Neurology at MGH and Harvard Medical School and Director of the Huntington’s disease Center of Excellence and the Laboratory of Neurodegeneration and Neurotherapeutics.He is a neuroscientist and clinician with expertise in quantitative neuroanatomy, molecular pharmacology, and experimental neuropathology of neurodegenerative diseases.   He is experienced in using immunologic methods to localize receptors and disease related proteins in brain, in quantitative morphology, and in using electron microscopy to analyze neuronal structure, cytology, and synapses. His lab focuses on HD and currently works on basic mechanisms of disease, identification of therapeutic targets, biomarker development, and the use of genetic mouse models to explore neuroprotective therapies, including several treatments now in clinical trials.  His lab collaborates with industry to test candidate therapies in HD mice. Dr. Hersch is also a leading HD clinician and clinical investigator.  He directs the MGH HD Center of Excellence and served on the national board of trustees for the Huntington’s disease Society of America (HDSA) for many years.  He was instrumental in developing the HDSA’s Center of Excellence program and was a member of the Venezuela Project, which conducted prospective clinical and genetic research. 

Dr. Hersch is co-chair of the Huntington Study Group (HSG) and chairs its Credentials Committee, Event Monitoring Committee, and Biomarker Working Group. Dr. Hersch is the study PI for the NCCAM-funded phase II and phase III multi-center trials of creatine in HD (CREST-HD, CREST-E), oversees other current creatine studies under his IND for creatine in HD, including the first therapeutic trial in at-risk and premanifest subjects (PRECREST). He was PI of the NINDS-funded multi-center trial of phenylbutyrate (IND#66023) in HD. He is also leading a multidisciplinary group in an NINDS supported effort to develop biomarkers for HD. Dr. Hersch has served as site investigator or steering committee member of numerous clinical trials in HD.

The central HSG administrative office is located at:

University of Rochester
1351 Mt. Hope Ave, Suite 223
Rochester, NY 14620
attention: Shari Kinel, JD, HSG Executive Director

Research clinicians interested in participating in the HSG should access the Huntington Study Group website for more information.


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