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Nominate a Condition

To nominate a condition for consideration by the Advisory Committee on Heritable Disorders in Newborns and Children for inclusion in the panel of recommended newborn screenings, you must submit a nomination form. 

The committee encourages individuals and organizations to form multi-disciplinary teams to submit nominations. Teams should include advocacy and professional organizations and individuals with expertise on the condition being nominated and other issues relevant to newborn screening. For assistance, contact The Genetic Alliance.

The purpose of the Nomination Form is to outline the evidence for formal consideration for screening of a particular heritable disorder in the newborn period. The nomination form initiates the process of Secretary's Advisory Committee on Heritable Disorders in Newborns and Children consideration.

The Nomination Form has three parts:

1. Identification of the nominator(s) and any organizational affiliation and the condition being proposed;
2. Structured questions about the disorder, the available screening and diagnostic tests; the treatment/intervention and its impact;
3. Supporting data and references for responses to questions and statements made on part 2.

Upon receipt, each nomination form is assigned a tracking number to facilitate communication and receives a Federal administrative review.

The Committee is next to review the nomination form, followed by an evidence-based review by an external body. After the completion of this review, the Committee again reviews the nomination and makes a decision.

Once the nomination process is completed, the Committee provides the nominator(s) with feedback on the strengths and weaknesses of the nomination. 

Conflict of Interest Statement

Please note that a formal signed Conflict of Interest statement by the nominator(s) is also required. You may use one of the versions that are linked on this page or a form similar to it. A potential or actual conflict of interest exists when commitments and obligations are likely to be compromised by the nominator(s)’other material interests, or relationships, especially economic, particularly if those interests or commitments are not disclosed. The Conflict of Interest statement should indicate whether the nominator(s) has an economic interest in, or acts as an officer or a director of any outside entity whose financial interests would reasonably appear to be affected by the addition of the nominated condition to the newborn screening panel. The nominator(s) should also disclose any personal, business, or volunteer affiliations that may give rise to a real or apparent conflict of interest. Relevant Federally and organizationally established regulations and guidelines in financial conflicts must be abided by. Individuals with a conflict of interest should refrain from nominating a condition for screening.