NIH Consensus Conference Will Examine Latest Research on PKU Diagnosis and Treatment
- What are the incidence and prevalence of PKU and other forms of hyperphenylalaninemias, and what is known about the genetic and clinical variability?
- What newborn screening strategies are available for diagnosis, what is the effectiveness of these strategies, and what cost-savings are generated by screening and treatment?
- What treatment regimens are used to prevent the adverse consequences of PKU? What is known about the effectiveness of these treatment and management strategies overall and with respect to variables such as time of initiation of dietary management, levels of phenylalanine at various ages, methods for enhancing dietary compliance, duration of dietary management, and dietary regimens for women of childbearing age and other adults?
- Based on this information, what are the recommended strategies for optimal newborn screening and diagnosis and lifelong management and followup of PKU?
- What research is needed to gather information that will optimize the outcome for individuals with PKU and their families?
The panel will present its draft statement to the public for comment at 9:00 a.m. on Wednesday, October 18. Following this public comment session, the panel will release its revised consensus statement at a news conference at 1:00 p.m. and take questions from the media.
The consensus statement is the report of an independent panel and is not a policy statement of the NIH or the Federal Government. The NIH Consensus Development Program was established in 1977 to resolve in an unbiased manner controversial topics in medicine. To date, NIH has conducted 112 such conferences addressing a wide range of controversial medical issues important to health care providers, patients, and the general public.
The primary sponsors of this conference are the NIH Office of Medical Applications of Research and the National Institute of Child Health and Human Development. Conference co-sponsors include the National Human Genome Research Institute, National Institute of Diabetes and Digestive and Kidney Diseases, National Institute of Neurological Disorders and Stroke, National Institute of Nursing Research, and the Maternal and Child Health Bureau of the Health Resources and Services Administration.
Additional information about this conference, including the meeting agenda, local area hotels, and directions to NIH, is available at the NIH Consensus Development Program Web site at http://consensus.nih.gov.
NOTE TO RADIO EDITORS: An audio report of the conference results will be available after 4 p.m. October 18, 2000 from the NIH Radio News Service by calling 1-800-MED-DIAL (1-800-633-3425).
NIH Videocasting will broadcast the conference live on the Internet. Go to the NIH Videocast Web site http://videocast.nih.gov/ any day during the conference and look for the link to the conference under "Today's Events." Viewing the videocast requires RealPlayer software, which can be downloaded from the NIH Videocast Web site.
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