Format

Send to

Choose Destination
Genet Med. 2008 Apr;10(4):259-61. doi: 10.1097/GIM.0b013e31816b64f9.

Long-term follow-up after diagnosis resulting from newborn screening: statement of the US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children.

Author information

1
Department of Pediatrics, Duke University, Durham, North Carolina, USA. alex.kemper@duke.edu

Erratum in

  • Genet Med. 2008 May;10(5):368. Telfair, Joseph [added].

Abstract

The US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children provides guidance to reduce the morbidity and mortality associated with heritable disorders, with a special emphasis on those conditions detectable through newborn screening. Although long-term follow-up is necessary to maximize the benefit of diagnosis through newborn screening, such care is variable and inconsistent. To begin to improve long-term follow-up, the Advisory Committee has identified its key features, including the assurance and provision of quality chronic disease management, condition-specific treatment, and age-appropriate preventive care throughout the lifespan of affected individuals. There are four components central to achieving long-term follow-up: care coordination through a medical home, evidence-based treatment, continuous quality improvement, and new knowledge discovery.

PMID:
18414208
DOI:
10.1097/GIM.0b013e31816b64f9
[Indexed for MEDLINE]

Supplemental Content

Full text links

Icon for Nature Publishing Group
Loading ...
Support Center