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August 3, 2017 9:30 am - August 4, 2017 3:00 pm

Meeting: HHS Advisory Committee on Heritable Disorders in Newborns and Children

  • Agency
  • Genetics/Genomics
  • Neuroscience

In accordance with the Federal Advisory Committee Act, notice is hereby given that a meeting is scheduled for the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). This meeting will be open to the public but advance registration is required. Please register online at​ by 12:00 p.m. ET on August 1, 2017. Information about the ACHDNC can be obtained by accessing the following Web site:​advisorycommittees/​mchbadvisory/​heritabledisorders/​index.html.

The meeting agenda will include:

  1. Presentations and discussion on the processes states use to identify and follow up on out of range newborn screening results;
  2. A presentation on phase one of the spinal muscular atrophy evidence review;
  3. Presentations on newborn screening topics such as the clinical and public health impact of Critical Congenital Heart Defects, quality measures in newborn screening, and a review of newborn screening technology; and
  4. Updates from the Laboratory Standards and Procedures workgroup, Follow-up and Treatment workgroup, and Education and Training workgroup.

The Committee will not be voting on a proposed addition of a condition to the Recommended Uniform Screening Panel (RUSP). Agenda items are subject to change. The final meeting agenda will be available 2 days prior to the meeting on the Committee's Web site:​advisorycommittees/​mchbadvisory/​heritabledisorders.

More information is available via the Federal Register notice.