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The Secretarys Advisory Committee on Heritable Disorders in Newborns and Children

  • As you may know, each state has its own newborn screening panel, which is the list of conditions that a baby will be screened for after birth. But how is each state’s screening panel determined?  In February 2003 the U.S. Department of Health and Human Services created a group called the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC). It was formed to advise the secretary on the best ways to reduce morbidity and mortality among babies who either have or are at risk for certain heritable disorders. One of the ways they do this is by determining the national recommendations for screening panels. This is called the Recommended Uniform Screening Panel (RUSP). The RUSP consists of 31 core diseases and 26 secondary diseases that are recommended to each state to screen for after birth. Although these are the nationally recommended disorders for newborn screening, not all states screen for the same disorders. Conditions included in the RUSP are easily detectable from screening, and if the disorders are caught early, they are treatable and can significantly improve the baby’s health outcomes. To learn about what conditions your state screens for, visit our Conditions Screened By State page.

    The advisory committee meets about 3 times a year, and the 26th meeting is taking place on Thursday January 26 and Friday January 27, 2012. Among many things that will be covered at this summit, they plan on discussing and voting on sending the 22q11.2 deletion syndrome nomination package to the evidence review workgroup, as well the hyperbilirubinemia nomination to the public health impact workgroup for further review. In order to add a new disorder to the RUSP, individuals and organizations are encouraged to form multi-disciplinary teams in order to submit a nomination.

    The committee then reviews these nominations, and if they have enough evidence to support further investigation, they send these nominations to an external evidence review board. This is the stage where 22q11.2 deletion syndrome and hyperbilirubinemia are at in the nomination process, so the outcome from the meeting votes will have a significant impact on if these disorders will make it to the next step towards getting added to the RUSP in the future. If they do move on, the workgroups will conduct a full review of the most up-to-date research on these disorders, and then if they find enough evidence to recommend screening, they will take that proposal to Secretary Sebelius who ultimately has the final decision of what goes on the RUSP. Over the next couple of months keep an eye out for how these conditions progress through the nomination process!

     

     

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