U.S. newborn screening system guidelines: Statement of the council of regional networks for genetic services

TLDR

CORN, established in 1985, facilitates information exchange among U.S. newborn screening programs, which vary widely in organization and outcomes, and has produced guidelines intended as a framework rather than a standard of care. The committee, composed of regional laboratory and administrator representatives plus liaison members, identified eight priority areas—organization, disorder selection, communication, quality assurance, funding, diagnosis and counseling, program evaluation, and liability—to guide guideline development.

Abstract

The Council of Regional Networks for Genetic Services (CORN) was created in 1985 to provide a forum for information exchange among groups concerned with public health aspects of genetic services. The newborn screening committee includes representatives from each genetic region of the United States (equally divided among laboratories and administrators) and liaison members from related professional groups. State and regional newborn screening programs across the U.S. vary widely in most aspects of their organization and hence their program outcome. The Newborn Screening Committee of CORN has identified eight specific areas of mutual importance to all programs. These areas include: organization and administration; selection and evaluation of disorders for screening; communication; quality assurance; funding; diagnosis, management, treatment and counseling; program evaluation; and liability. Basic guidelines have been developed in these areas so that U.S. screening programs may begin to achieve uniform consistency in outcome. The guidelines are not intended to judge standard of care, but rather are meant as a framework about which to mold newborn screening programs.