(Download) "Monitoring Reportable Events and Unanticipated Problems: The PHAROS and PREDICT Studies of Huntington Disease." by IRB: Ethics & Human Research ~ Book PDF Kindle ePub Free
eBook details
- Title: Monitoring Reportable Events and Unanticipated Problems: The PHAROS and PREDICT Studies of Huntington Disease.
- Author : IRB: Ethics & Human Research
- Release Date : January 01, 2007
- Genre: Health & Fitness,Books,Health, Mind & Body,
- Pages : * pages
- Size : 224 KB
Description
The continual discovery of human genes linked to disease has led to increasing numbers of longitudinal studies. These types of studies observe healthy individuals identified by family history or genetic testing to be at high risk for the disease phenotype. They are crucial for understanding the clinical features of the diseases, their penetrance, methods for early detection, and the potential for developing preventive or modifying treatments for use presymptomatically or in an early symptomatic period. Genetic risk factors often identify quite serious diseases, such as neurodegenerative disorders, that can have a high probability or even certainty of occurring, yet for which there are few, if any, effective treatments. The Huntington Study Group (HSG) is a democratic, worldwide consortium of academic investigators dedicated to clinical research for Huntington disease. The group has initiated two large prospective, observational studies. The first, the Prospective Huntington At Risk Observational Study (PHAROS) is following 1,001 individuals at 50% risk for Huntington Disease (HD) who have chosen not to be tested for the genetic mutation known to cause it. (1) The second study, Neurobiological Predictors of Huntington Disease (PREDICT-HD), plans to enroll 500 individuals known to carry the genetic mutation (expanded CAGn repeat) that causes HD and a control group of 125 formerly at-risk individuals who are known not to carry the expanded allele. (2) The overall aims of these studies are to determine the rates of phenoconversion (developing motor symptoms that unequivocally constitute a diagnosis of symptomatic HD); to apply clinical, neuropsychological, and imaging tools to learn more about the prodromal period and whether any tool can serve to facilitate diagnosis; and to explore the environmental, ethical, legal, and social milieu of this poorly understood population in order to enable the design of future neuroprotective therapeutic clinical trials powered to assess primary prevention. These multicenter studies are the first two studies to prospectively and systematically follow large samples of currently healthy, unaffected individuals at risk for or known to carry the gene for developing HD.
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