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Upcoming Events
NIH PKU SCIENTIFIC REVIEW CONFERENCE
February 22-23, 2012
Bethesda, MD, USA
Natcher Auditorium
NIH Campus
Bethesda, MD
Register
Who should attend: This meeting is open to all. Clinicians and researchers involved in the care of persons with PKU, individuals with PKU and their families, advocacy organizations, governments, and interested industry representatives are encouraged to attend. There is no registration fee, but preregistration is required. Registration information will be available soon.
Background: In October 2000, the National Institutes of Health (NIH) published a Consensus Development Conference Statement for screening and management of Phenylketonuria (PKU). Since then, new treatments, including pharmacological, have emerged. To assist clinicians in making treatment decision, NIH has revisited the 2000 guidelines. Five working groups, composed of 8-12 topical experts, public members, and federal stakeholders, were convened to explore an expanded body of literature and addressed important questions regarding treatment of PKU. The working groups are organized around the following topics:
Diet Control and Management
Pharmacologic Interventions
PKU and Pregnancy
Long-Term Outcomes and Follow-up
Molecular Testing, New Technologies, and Epidemiologic Considerations
These working groups will present their findings during the NIH Scientific Review Conference to be held February 22-23, 2012. The results from an Evidence-based Practice Center review, contracted by the Agency for Healthcare Research and Quality, that evaluated the comparative effectiveness of treatments for PKU, including diet and sapropterin dihydrochloride, will also be presented. Public input will be solicited and a final document will be published that will consider the state of the science, recent research findings, current treatments, the role of sapropterin, and future research needs for PKU. |
