||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 Committee will hear presentations and discussions on topics including newborn screening long-term follow-up and prenatal education regarding newborn screening bloodspots. The Committee will also review draft reports from the Pilot Study and Cost Analysis workgroups and hear updates from the Committee’s subcommittees on Laboratory Standards and Procedures, Follow-up and Treatment, and Education and Training. Tentatively, the Committee is expected to review and/or vote on whether or not the nominated condition Guanidinoacetate Methyltransferase deficiency should be referred for a full evidence-based review.
For more information go to http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/