||ACHDNC provides expert advice and recommendations to the Secretary about the development of newborn screening activities, technologies, policies, guidelines, and programs for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders. In addition, the Committee’s recommendations regarding additional conditions/heritable disorders for screening that have been adopted by the Secretary are included in the Recommended Uniform Screening Panel (RUSP) and constitute part of the comprehensive guidelines supported by the Health Resources and Services Administration. The committee is composed of 15 voting members.
The August 2015 meeting will include
• A final evidence review report on the Adrenoleukodystrophy (ALD) condition nomination for inclusion in the RUSP
o The Committee is expected to vote on whether or not to recommend to the Secretary the addition of ALD to the RUSP
• A presentation by the Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) on their activities and the NewSTEPs data repository, a centralized and secure database designed for state newborn screening programs to explore data to meet program needs,
• Updates on the implementation of screening for Severe Combined Immunodeficiency, Critical Congenital Heart Disease, and Pompe Disease
• Updates from workgroups focused on cost analysis in newborn screening, newborn screening timeliness, and pilot studies for evidence-based reviews of conditions.
Time is allotted on both days for public comments.
For more information go to http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/