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Department of Health and Human Services
Advisory Committee on Heritable Disorders in Newborns and Children
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Nominate a Condition

The RUSP is a list of disorders that are screened at birth and recommended by the Secretary of the Department of Health and Human Services (HHS) for states to screen as part of their state universal newborn screening (NBS) programs. Disorders on the RUSP are chosen based on evidence that supports the potential net benefit of screening, the ability of states to screen for the disorder, and the availability of effective treatments. It is recommended that every newborn be screened for all disorders on the RUSP. Most states screen for the majority of disorders on the RUSP; newer conditions are still in process of adoption. Some states also screen for additional disorders. Although states ultimately determine what disorders their NBS program will screen for, the RUSP establishes a standardized list of disorders that have been supported by the Committee and the Secretary of HHS.

Conditions for consideration by the Committee for the Recommended Uniform Screening Panel (RUSP) must be nominated.

The Committee encourages individuals and organizations to form multi-disciplinary teams to submit nominations for conditions to be considered for inclusion on the RUSP. Teams should include researchers and/or clinicians with expertise on the condition being nominated, advocacy and/or professional organizations with knowledge of issues relevant to newborn screening, and interested consumers/individuals.

To apply, the lead nominator or proponent should submit a Nomination Package that includes:

  • Cover letter by the lead nominator that identifies all multi-disciplinary team members and their organizational affiliation(s), if applicable;
    Letters of support (from multi-disciplinary team members), if applicable;
  • Completed Conflict of Interest Disclosure Forms* from all team members;
  • Responses to Nomination Form and;
  • Supporting data and scientific/clinical references to substantiate all responses to Nomination Form questions.

*A potential or actual conflict of interest exists when commitments and obligations are likely to be compromised by the nominator(s)'s other material interests or relationships (especially economic), particularly if those interests or commitments are not disclosed.

Next Steps

Nomination and Prioritization Workgroup

The Committee's Nomination and Prioritization (N&P) Workgroup reviews the completed Nomination Package and compiles a summary for Committee consideration. The Committee decides if sufficient evidence is available, and votes to assign, or not assign, the nominated condition to the external Condition Review Workgroup. Nominators whose conditions are not assigned to the Condition Review Workgroup are provided with feedback.

Condition Review Workgroup

The external Condition Review Workgroup completes a systematic evidence-based review, provides updates, and presents a final report to the Committee on assigned conditions.

Committee Deliberations and Vote

The Committee discusses and deliberates on the evidence presented by the Condition Review Workgroup. The Committee uses a decision matrix to guide their final decisions. Then the Committee votes to recommend or not recommend adding the nominated condition to the RUSP for consideration by the Secretary of Health and Human Services. Nominators whose conditions are not recommended for addition to the RUSP are provided with feedback.

Final Decision

The Secretary of Health and Human Services makes the final decision on whether to add, or not add, a recommended condition to the RUSP.