CINCINNATI - Movement disorders specialists at The Neuroscience Institute at the University of Cincinnati (UC) and University Hospital have joined the Huntington Study Group's multi-center, observational research study of individuals who belong to families with Huntington's disease (HD), an inherited neurological disorder that has no known cure.
The study, entitled the Cooperative Huntington's Observational Research Trial, or COHORT, is an ambitious project involving the collection and integration of family history and clinical data and the creation of a biological specimen repository. The study seeks to uncover information about the natural history of HD to further scientific understanding of the disease and to aid in the development of potential treatments. The study will lay the foundation for future research studies of experimental drugs aimed at slowing or postponing the onset and progression of HD.
Huntington's disease affects about 30,000 people in the United States. Another 150,000 are at risk. Caused by a defective gene, HD involves the destruction of brain cells, resulting in involuntary movements and the gradual diminishing of an individual's ability to walk, talk, think, and reason.
Fredy J. Revilla, M.D., head of the Center for Parkinson's Disease and Movement Disorders at The Neuroscience Institute and assistant professor of neurology at the UC College of Medicine, is principal investigator for the Cincinnati portion of the study.
"Treatments that stop or delay the onset of HD symptoms are the main focus of research efforts in Huntington's disease," Dr. Revilla said. "However, starting such neuroprotective treatments at the time of neurological diagnosis may be too late. For this reason, observational studies like COHORT are of critical importance. They allow us to understand the natural history of HD while teaching us how to recognize subtle changes that may precede overt neurological symptoms by many years. People at risk for HD would then be able to start treatments on a timely fashion."
The study will involve adults and children who have clinically diagnosed HD and adults who are a part of an HD family. Individuals who choose to participate will have one study visit every year for as long as they are able or choose to participate. Those who are 18 years of age and older will have blood drawn for genetic testing.
Data from the COHORT study will be collected in databases designed to protect the privacy of all participants.
Eligible individuals are 1) those who have HD or have tested positive for the HD gene; 2) parents, children, and siblings of individuals who have HD or have tested positive for the gene; 3) grandparents and grandchildren of those participating in the study who have HD or have tested positive for the gene; 4) spouses and gene-negative family members of study participants who have HD or have tested positive for the gene.
COHORT is organized and conducted by HSG, a non-profit, cooperative group of HD experts from medical centers in North America, Europe, and Australia who are dedicated to improving treatment for people affected by Huntington's disease. Ira Shoulson, MD, of the University of Rochester, is principal investigator of the study, which initially will include 45 clinical sites.
Huntington's disease typically strikes people between 35 and 55 years of age. Although some medications can help alleviate some of HD's symptoms, there is no known cure or medication to help slow or halt the progression of the disease.
Patients or families wishing to enroll in COHORT in the Greater Cincinnati/Northern Kentucky area can contact Maureen Gartner, R.N., at (513) 558-0018 or Maureen.Gartner@UC.Edu.
For more information, please contact the Huntington Study Group at (800) 487-7671 or www.Huntington-Study-Group.org, or visit the Huntington Project Web site at www.huntingtonproject.org. The HSG and the Huntington Project are supported by Huntington's Disease Soci
ety of America, the Hereditary Disease Foundation, the Huntington Society of Canada, and the High Q Foundation.
The Neuroscience Institute, a regional center of excellence located at UC and University Hospital, is recognized for its premier facilities and physicians, its ongoing clinical and basic science research, and its advanced training programs for neuroscience specialists. It offers comprehensive, compassionate, and state-of-the-art care for patients with diseases and disorders of the brain and nervous system.
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