The Health Resources Services Administration will hold a meeting of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). The ACHDNC provides advice and recommendations to the Secretary of HHS on 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, ACHDNC's recommendations regarding inclusion of additional conditions and inherited disorders for screening are included in the Recommended Uniform Screening Panel (RUSP) following adoption by the Secretary.
The meeting agenda will include: (1) Presentations and discussion on risk assessment in newborn screening; (2) presentation of educational tools for communicating newborn screening results; (3) presentations from states working toward timeliness goals in newborn screening; (4) an update on the status of newborn screening pilot studies for Guanidinoacetate Methyltransferase (GAMT) deficiency; (5) updates from the Laboratory Standards and Procedures workgroup; (6) updates from the Follow-up and Treatment workgroup; (7) updates from the Education and Training workgroup; and (8) reviewing the process for assessing the public health impact of adding conditions to the RUSP.
Members of the public may attend in person or via webcast. More information is available at this Federal Register notice.