title: 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.
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.
authors.affiliation: Department of Pediatrics, Duke University, Durham, North Carolina, USA. alex.kemper@duke.edu
authors.forename: Alex R
authors.initials: AR
authors.lastname: Kemper
authors.forename: Coleen A
authors.initials: CA
authors.lastname: Boyle
authors.forename: Javier
authors.initials: J
authors.lastname: Aceves
authors.forename: Denise
authors.initials: D
authors.lastname: Dougherty
authors.forename: James
authors.initials: J
authors.lastname: Figge
authors.forename: Jill L
authors.initials: JL
authors.lastname: Fisch
authors.forename: Alan R
authors.initials: AR
authors.lastname: Hinman
authors.forename: Carol L
authors.initials: CL
authors.lastname: Greene
authors.forename: Christopher A
authors.initials: CA
authors.lastname: Kus
authors.forename: Julie
authors.initials: J
authors.lastname: Miller
authors.forename: Derek
authors.initials: D
authors.lastname: Robertson
authors.forename: Joseph
authors.initials: J
authors.lastname: Telfair
authors.forename: Brad
authors.initials: B
authors.lastname: Therrell
authors.forename: Michele
authors.initials: M
authors.lastname: Lloyd-Puryear
authors.forename: Peter C
authors.initials: PC
authors.lastname: van Dyck
authors.forename: R Rodney
authors.initials: RR
authors.lastname: Howell
mesh_terms: D002648:Child; D019468:Disease Management; D030342:Genetic Diseases, Inborn / Q000235:genetics*; D006801:Humans; D007231:Infant, Newborn; D008134:Long-Term Care / Q000379:methods; D015997:Neonatal Screening / Q000379:methods*; D017410:Practice Guidelines as Topic; D014481:United States; D014483:United States Dept. of Health and Human Services