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

Cynthia F. Hinton, Lisa Feuchtbaum, Christopher A. Kus, Alex R. Kemper, Susan A. Berry, Jill Levy-Fisch, Julie Luedtke, Celia Kaye, Coleen A. Boyle

Research output: Contribution to journalReview articlepeer-review

24 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)861-865
Number of pages5
JournalGenetics in Medicine
Volume13
Issue number10
DOIs
StatePublished - Oct 2011

Keywords

  • data collection
  • health outcomes
  • long-term-follow-up
  • newborn screening
  • quality assurance

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