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

Alex R. Kemper, Coleen A. Boyle, Javier Aceves, Denise Dougherty, James Figge, Jill L. Fisch, Alan R. Hinman, Carol L. Greene, Christopher A. Kus, Julie Miller, Derek Robertson, Brad Therrell, Michele Lloyd-Puryear, Peter C. Van Dyck, R. Rodney Howell

Research output: Contribution to journalComment/debate

45 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)259-261
Number of pages3
JournalGenetics in Medicine
Volume10
Issue number4
DOIs
StatePublished - Apr 1 2008

Keywords

  • Comprehensive health care
  • Guideline
  • Neonatal screening

ASJC Scopus subject areas

  • Genetics(clinical)

Fingerprint Dive into the research topics of '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'. Together they form a unique fingerprint.

  • Cite this

    Kemper, A. R., Boyle, C. A., Aceves, J., Dougherty, D., Figge, J., Fisch, J. L., Hinman, A. R., Greene, C. L., Kus, C. A., Miller, J., Robertson, D., Therrell, B., Lloyd-Puryear, M., Van Dyck, P. C., & Howell, R. R. (2008). 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, 10(4), 259-261. https://doi.org/10.1097/GIM.0b013e31816b64f9