Collaboration Details

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Title of Collaborative Activity:

Newborn Screening Coding and Terminology Guide

Description of Collaborative Activity:

This ongoing collaboration develops, supplements, and publicizes a free online resource with guidance to help promote the efficient electronic exchange of standardized newborn screening data. Related efforts include studying the screening process for diseases including severe combined immunodeficiency (SCID), lysosomal storage disorders (LSDs), and critical congenital heart disease (CCHD), and developing standard codes for ordering and reporting the results of newborn screening for SCID, CCHD, and other conditions added to the Uniform Recommended Screening Panel by the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.

Type of Collaborative Activity:

Resource Development

Year the Collaborative Activity Originated:

2007

NIH Participating Institutes/Centers/Office of the Director:

NHGRI, NHLBI, NICHD

HHS Agency Collaborators on this Activity:

CDC, FDA, HRSA, IOS, AHRQ