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Advisory Committee on Heritable Disorders in Newborns and Children

 

The statutory authority for the Congressionally established Advisory Committee on Heritable Disorders in Newborns and Children (Committee) expired on September 30, 2019. All official business related to the Congressionally established Committee, including workgroup activities, is halted at this time. Options for continuing the work of the Committee are being considered. Further information will be provided on the Committee’s website when available.

The mission of the Advisory Committee on Heritable Disorders in Newborns and Children is to reduce morbidity and mortality in newborns and children who have, or are at risk for, heritable disorders.

The Advisory Committee on Heritable Disorders in Newborns and Children (Committee) was established under the Public Health Service Act, Title XI, § 11-11 (42 U.S.C. 300b-10), as amended by the Newborn Screening Saves Lives Reauthorization Act of 2014 (P.L. 113-240).

The Committee recommends that every newborn screening program include a Uniform Screening Panel (PDF - 12 MB)* that screens for 35 core disorders and 26 secondary disorders; the disorders' selection was based on the Newborn Screening: Towards a Uniform Screening Panel and System (PDF - 191 KB).

The Committee advises the Secretary, U.S. Department of Health and Human Services on the most appropriate application of universal newborn screening tests, technologies, policies, guidelines, and standards. Specifically, the committee provides to the Secretary, the following:

  • Advice and recommendations concerning grants and projects authorized awarded or funded related to screening heritable disorders in newborns and children;
  • Technical information to develop Heritable Disorders Program policies and priorities will enhance the ability of the state and local health agencies to provide screening, counseling and health care services for newborns and children who have or are at risk for heritable disorders; and
  • Recommendations, advice and information to enhance, expand, or improve the ability of the Secretary to reduce mortality and morbidity from heritable disorders in newborns and children.

The committee was chartered on May 7, 2015.


*Individuals using assistive technology may not be able to fully access information in this file. For assistance, please email HRSAAccessibility@hrsa.gov.

Date Last Reviewed:  September 2019