Monday, October 24, 2011 - Our incredible special guest is Dr. LaVonne Goodman from HD Drug Works.
Though the HDSA has provided the "A Physicians Guide to the Management of Huntington's Disease" for more than a decade (3rd edition recently available), there have been no published guides that have been peer-reviewed by physician leaders from the EHDN or HSG. Fortunately over the last 3 years both groups have spearheaded efforts within working-group committees to establish HD standard of care guides; however, this effort has proved difficult because individual experts may disagree, and there is lack of evidence from clinical trials to support any opinion.
Though it isn't equal to an evidence base, expert experience can be valuable. As part of a project to help develop HD treatment guides, Dr. Goodman worked with EHDN and HSG doctors to identify (through surveys) the drug treatment patterns of a large number of international experts for three symptoms of HD. And also important to getting this information out, they worked to put the combined results into a format that would be useful, accessible, and could effectively fit into times frames of general physician office visits. Why is this important? General physicians and general neurologists provide medical care for many, indeed probably most, HD patients. Having easy access to the experts' care patterns can improve the quality of care delivered by busy doctors who have limited experience with HD and need time-efficient guides.
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