Nominate a Condition

• Nomination Form (Microsoft Word)

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 is to be used to initiate the process of ACHDGDNC 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.

ACHDGDNC encourages the preparation of the nomination form by a multi-disciplinary team effort. This team effort should reflect the provision of evidence by both advocacy and professional organizations and individuals with expertise on the condition being nominated and other issues relevant to newborn screening. The Genetic Alliance offers their assistance to potential nominators.

Each Nomination Form will be assigned a tracking number to facilitate communication.

Once the nomination process has been completed, the ACHDGDNC will provide the nominator(s) with feedback on the strengths and weaknesses of the nomination.

Please note that a formal Conflict of Interest statement by the nominator(s) is also required. 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.

Reference: Watson MS, Mann MY, Lloyd-Puryear MA, Rinaldo P, Howell RR. Newborn Screening: Toward a Uniform Screening Panel and System. Genetics in Medicine 8 (S1): 1S-252S, 2006.