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.
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.
Kemper
Alex R
AR
Department of Pediatrics, Duke University, Durham, North Carolina, USA. alex.kemper@duke.edu
Boyle
Coleen A
CA
Aceves
Javier
J
Dougherty
Denise
D
Figge
James
J
Fisch
Jill L
JL
Hinman
Alan R
AR
Greene
Carol L
CL
Kus
Christopher A
CA
Miller
Julie
J
Robertson
Derek
D
Telfair
Joseph
J
Therrell
Brad
B
Lloyd-Puryear
Michele
M
van Dyck
Peter C
PC
Howell
R Rodney
RR
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