What questions should newborn screening long-term ... [Genet Med. 2011] - PubMed result

What questions should newborn screening long-term ... [Genet Med. 2011] - PubMed result: "Genet Med. 2011 Jun 28. [Epub ahead of print]
What questions should newborn screening long-term follow-up be able to answer? A statement of the US Secretary for Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children.
Hinton CF, Feuchtbaum L, Kus CA, Kemper AR, Berry SA, Levy-Fisch J, Luedtke J, Kaye C, Boyle CA.
Source
From the 1Centers for Disease Control and Prevention, Atlanta, Georgia; 2California Department of Health Services, Richmond, California; 3New York State Department of Health, Albany, New York, representing the Association of State and Territorial Health Officials (ASTHO); 4Department of Pediatrics, Duke Clinical Research Institute, Duke University, Durham, North Carolina; 5Department of Pediatrics, University of Minnesota, Minneapolis, Minnesota; 6Save Babies Through Screening Foundation, Scarsdale, New York; 7Nebraska Department of Health and Human Services, Lincoln, Nebraska; and 8Department of Pediatrics, University of Colorado at Denver School of Medicine, Aurora, Colorado.

Abstract

The US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children provides guidance on reducing the morbidity and mortality associated with heritable disorders detectable through newborn screening. Efforts to systematically evaluate health outcomes, beyond long-term survival, with a few exceptions, are just beginning. To facilitate these nascent efforts, the US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children initiated a project to define the major overarching questions to be answered to assure that newborn screening is meeting its goal of achieving the best quality outcome for the affected children and their families. The questions identified follow the central components of long-term follow-up-care coordination, evidence-based treatment, continuous quality improvement, and new knowledge discovery-and are framed from the perspectives of the state and nation, primary and specialty healthcare providers, and the impacted families. These overarching questions should be used to guide the development of long-term follow-up data systems, quality health indicators, and specific data elements for evaluating the newborn screening system.

PMID: 21716119
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