Clinical trials are conducted of experimental treatments for Huntington's disease (HD). Studies of medications are usually double-blind and placebo-controlled, that is pills are either the test drug or a placebo and neither the doctor nor the patient knows which is which. Studies are often conducted under the auspices of the Huntington Study Group. Other therapeutic trials may be sponsored by pharmaceutical and biotechnology companies or the National Institute of Health. The Center has conducted a number of trials on its own, including studies of vitamin E and the antiexcitotoxic agent idebenone. Studies currently enrolling include:
Longitudinal Core Study
The Longitudinal Core Study was designed to observe people over the entire course of the neurodegenerative diseases, such as HD. Participants receive yearly neurological and psychological evaluations, and bi-annual magnetic resonance imaging (MRI) scans. The neurological evaluations assess the amount of functional impairment an individual has. The psychological evaluations determine the person's current level of cognitive (intellectual) functioning. Finally, the MRIs are conducted to look for structural changes that occur in the brain over time.
This study is exploring whether the drug memantine (Namenda), which is approved by the Food and Drug Administration (FDA) for use with Alzheimer's disease, might also improve memory and thinking ability in patients with HD. Memantine is not approved by the FDA for use with HD. However, the FDA has approved the use of memantine in this study. Men or women, aged 18 or older, who have been diagnosed with HD and have current problems with memory or concentration are be eligible to join. The study is being done at three sites including The Johns Hopkins Hospital and will involve a total of 72 participants who will be followed for six months.
PREDICT HD Study
This is a very large multi-center observational study of presymptomatic HD mutation positive individuals, especially focusing on detailed cognitive function testing. It involves yearly visits, neurological exams, blood drawing, and neuropsychological testing. It is hoped that this will provide the background for future therapeutic trials.
COHORT HD Study
This is a very large multi-center observational study of individuals with HD and also both presymptomatic HD mutation positive individuals, and gene negative family members as controls. It involves yearly visits, neurological exams and brief physical exams, briefer neuropsychological testing, family history (optional) and blood drawing. Like the PREDICT-HD study it is hoped that this will provide the background for future therapeutic trials.
For research information, please contact:
Sr. Research Program Coordinator
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Baltimore, MD 21287