Collaboration Details

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Title of Collaborative Activity:

Ten years post PKU Consensus Conference: State of the Science (committee)

Description of Collaborative Activity:

The purpose of this collaboration is to have a scientific discussion to address management of phenylketonuria (PKU) in light of recent research findings. Screening and management guidelines for PKU were last published as the result of a Consensus Conference held in October 2000, and there have been new developments since that time. This new discussion will consider the state of the science in the areas of diet control and management; pharmacologic interventions; PKU and pregnancy; long-term cognitive outcomes and follow-up; and molecular testing, new technologies, and epidemiologic considerations. We are convening working groups to generate and address specific questions related to these topics. In parallel, an AHRQ Evidence-based Practice Committee is independently evaluating the use of newly available pharmaceutical interventions relative to dietary interventions for PKU, with the NIH as a partner in this process. We plan to host a conference in late 2011 (or early 2012) after the AHRQ review process, to discuss the conclusions and recommendations of the working groups.

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