Article
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
Genetics in Medicine
(2008)
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.
Keywords
- Neonatal screening,
- Comprehensive health care,
- Guideline
Disciplines
Publication Date
April 10, 2008
DOI
10.1097/GIM.0b013e31816b64f9
Citation Information
Alex R. Kemper, Coleen A. Boyle, Javier Aceves, Denise Dougherty, et al.. "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" Genetics in Medicine Vol. 10 Iss. 4 (2008) p. 259 - 261 Available at: http://works.bepress.com/joseph_telfair/13/