Contact: Gerry GurvitchPhone: 301-530-7127[email protected]
Genetics Society wins Federal Grant for Newborn Screening Project Overview
Bethesda, Md. -- The Health Resources and Services Administration has awarded the American College of Medical Genetics (ACMG) a two-year contract to outline a process of standardization of outcomes and guidelines for state newborn screening programs and to define responsibilities for collecting and evaluating outcome data. This will include recommendations for a uniform panel of conditions to include in state newborn screening programs.
The recommendations will be based on best scientific evidence and analysis of that evidence. This contract will use the recommendations in "Serving the Family from Birth to the Medical Home: A Report from the Newborn Screening Task Force," (Supplement to Pediatrics, August 2000, Volume 106(2) 383-426) as the framework for delineation of tasks.
The project will consist of three major phases:
* Project Planning
* Examination of Available Information concerning scope of newborn screening programs and the anticipated future directions, including delineation of best evidence for screening specific conditions.
* The development of a set of recommendations based on this best evidence that will address the development of a uniform condition panel; model policies and procedures for state newborn screening programs; minimum standards for state newborn screening programs; and, a model decision-matrix for program expansion. Other task will include identifying appropriate health outcomes to be incorporated into evaluation protocols for state newborn screening monitoring; considering the value of a national process for quality assurance and oversight; and creating a model system of data management for newborn screening programs that would lead to national program evaluation capability nationally.
"There have been significant increases in knowledge of genetics and testing technologies during the past few years that have led to expansion of newborn screening programs that identify infants with treatable conditions early in life. We look forward to the opportunity to guide the further development and expansion of these programs to benefit future generations." Michael S. Watson, Ph.D., FACMG, Executive Director, American College of Medical Genetics and Project Director
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With the burgeoning development of new and complex clinical genetic services and genetic testing which occurred in the 1980's, the need for the establishment of an independent body to represent the clinical practitioners of medical and laboratory genetics became evident. The American College of Medical Genetics (ACMG) was established and incorporated in 1991. In January 1993, it was accorded full membership in the Council of Medical Specialty Societies and is now the recognized body representing doctoral level laboratory and clinical practitioners of medical genetics in the United States.
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