Novel trial on Huntington's disease begins

NEWS IN BRIEF — Posted Aug. 28, 2006

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In an attempt to glean information about the earliest signs of Huntington's disease that could lead to designing trials of interventions to delay its onset, an international team of researchers led by the University of Rochester in New York has recruited more than a thousand participants for an observational study. These people are at high risk for the genetic disorder, but do not yet show signs of it, according to a paper outlining the project published in the July Archives of Neurology.

Participants in the Prospective Huntington At Risk Observational Study, or PHAROS, have a 50% chance of developing Huntington's chorea because of their family history but have refused to undergo confirmatory genetic testing. Researchers have genotyped participants, although the resulting information regarding this condition will never be shared, not even with the subjects themselves. Researchers also intend to monitor those involved, checking every nine months for the next four to 10 years for signs of the disease.

Those running the study also hope it will provide psychological insights.

"The experience from PHAROS also informs us how persons at high risk of developing a disabling genetic disease deal with lingering uncertainties about their future health," said Ira Shoulson, MD, the study leader and a neurologist at the University of Rochester Medical Center.

Note: This item originally appeared at

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