Nominate a Condition
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:
- Identification of the nominator(s) and
any organizational affiliation and the condition
being proposed;
- Structured questions about the disorder,
the available screening and diagnostic tests;
the treatment/intervention and its impact;
- 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. |