Huntington's Disease Research
There is a wide range of research into the cause, diagnosis and treatment of Huntington's Disease. Our web site will focus on research of particular interest to Indiana HD patients and families. In addition to Indiana based research projects, many Indiana patients and families also participate in national and international research studies. The HDSA Research web pages have a comprehensive listing of research projects and you are encouraged to visit those links below:
Latest Research Updates and News The Research Pipeline
Clinical Trials
Therapies in Pipeline Research Reports Library HD Glossary
Milestones in Huntington's Disease Research Links to Other Sources of Research Information HD Research - Past and Future
(top of page) The Huntington Study Group
The Huntington Study Group (HSG) is a non-profit affiliation of approximately 62 clinical centers that plan and conduct trials aimed at treating HD. Particpating researchers are from medical centers in the United States, Canada, Europe and Australia, experienced in the care of patients and families affected by Huntington disease and dedicated to clinical research of this hereditary disorder. The HSG focuses on the conception, conduct and communication of clinical research, including treatment trials and observational studies aimed at relieving the burden and slowing the progression of Huntington disease.
The HSG has a number of opportunities for both HD patients and family members to participate in clinical trials. If you are interested in taking part in a study, the HSG research site personnel can help you determine what trial might be right for you. Some studies are therapeutic trials (experimental or known compounds/drugs are used). Some studies are observational trials (no drugs are used). Please contact an HSG research site or the HSG directly (800-487-7671 - toll free from the U.S. and Canada) for more
information.
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Indiana Focused Research
With the relatively high incidence of Huntington's Disease in Indiana state institutions has been actively involved in HD research for many years. We are very fortunate in Indiana to have world-class researchers in the field of Huntington’s Disease. Research projects with a
particular focus on Indiana HD families are listed below. To Find-out more about current research or to see if you can participate, please follow these links:
Huntington's Disease Center of Excellence at Indiana University
Indiana University Medical Center in Indianapolis is home to a HDSA Center of Excellence for Huntington’s Disease. Through a multidisciplinary health care team, the Center provides comprehensive services for people
affected by Huntington’s Disease. Services include:
- Medical evaluation and treatment - Social services
- Genetic counseling - Research opportunities
The HDSA Center of Excellence staff are also coinvestigators on and participate in a number of HD research studies including:
Observational trials currently in progress:
- COHORT, Cooperative Huntington’s Observational Research Trial. Actively recruiting research participants.
- PREDICT-HD, Neurobiological Predictors of Huntington Disease. Actively recruiting research participants.
- PHAROS, Prospective Huntington At Risk Observational Study
- RESPOND-HD, An Examination of Responses to Potential Discrimination from Individuals At Risk for Huntington Disease. Recruitment for RESPOND-HD is now in progress Clinical trials currently in progress:
- 2CARE, Coenzyme Q10 in Huntington Disease. Actively recruiting research participants.
- DIMOND, A Multi-Center, Phase 2, Randomized, Double-Blinded, Placebo-Controlled Study of Dimebon in Subjects with Huntington Disease. Ongoing, but no longer recruiting participants.
- HART, A Multi-Center, North American, Randomized, Double-Blind, Parallel Group Study Comparing Three Doses of ACR16 Versus Placebo for the Symptomatic Treatment of Huntington Disease. Actively recruiting research participants.
For more information:
Social worker: Leo Rafail, (317) 271-0624, Toll-free 866-488-0008, [email protected] Nurse: (317) 278-5450
Toll-free 866-740-1941
general information: [email protected] web site: http://www.iuhdclinic.org/
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The National Research Roster for Huntington's Disease Patients & Families
The National Research Roster for Huntington Disease Patients and Families was established in 1979 at Indiana University in response to a recommendation from the Commission for the Control of Huntington’s Disease and its Consequences. The National Institute of Neurological Disorders and Stroke, a branch of the National Institutes of Health, has funded the Roster since its inception. The Roster computerizes the names of families, including information about the history of HD in the family (family trees) and other related data. This information identifies HD patients and families who are interested in
participating in research projects.
To become a member of the Roster, or if you have any questions, please call the Roster at 1(866) 818-0213 or email us at [email protected].
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Research Links of Interest:
National Institute of Neurological Disorders and Stroke
The web site, Huntington's Disease: Hope Through Research, is a comprehensive source for research information about Huntington's Disease from the National Institutes of Health.
Huntington's Outreach Project for Education at Stanford (HOPES)
