Advisory Committee on Heritable Disorders in Newborns and Children

Two New Federal Register Notices

The Health Resources and Services Administration (HRSA) published two federal register notices with requests for public comment on the consideration of adding Duchenne Muscular Dystrophy (DMD) and Metachromatic Leukodystrophy (MLD) to the Recommended Uniform Screening Panel (RUSP).  When drafting responses to the notices, consider the data and other information described in the Evidence Review Group’s (ERG) external evidence review manuscripts.

Duchenne Muscular Dystrophy (2025)

Metachromatic Leukodystrophy (MLD) (2025)

The Advisory Committee on Heritable Disorders in Newborns and Children (Committee) was established under the Public Health Service (PHS) Act, 42 U.S.C. 217a: Advisory councils or committees (PDF - 214 KB), and Title XI § 1111 (42 U.S.C. § 300b-10) (PDF - 208 KB).

The Committee recommends that every newborn screening program include a Uniform Screening Panel (PDF - 94 KB) * that screens for 36 core disorders and 26 secondary disorders; they based the disorders' selection on the Newborn Screening: Towards a Uniform Screening Panel and System (PDF - 11 MB).

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
  • 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

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

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