The real benefit of newborn screening occurs from the long-term management of conditions identified through newborn screening. Although the particular treatment varies by condition, the conditions identified through newborn screening are chronic and complex, and therefore require careful treatment plans and coordinated care between primary care providers and specialists. The Medical Home Workgroup of the National Coordinating Center for the Genetic and Newborn Screening Service Collaboratives (NCC) has recommended an approach to providing family-centered care for children identified through newborn screening programs. [Cooley: 2013]
Baby's First Test
Site developed by the Genetic Alliance, with funding from the Maternal and Child Health Bureau, Health Resources and Services Administration, provides information for health care professionals and families about newborn screening, with links to state newborn screening programs, descriptions of conditions, and support and advocacy groups.
A nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities; their site provides access to myriad resources, services, policies, and publications.
Newborn Screening Coding and Terminology Guide (NLM)
Site sponsored by the National Library of Medicine to promote and facilitate the use of electronic health data standards in recording and transmitting newborn screening test results; includes standard codes and terminology for newborn tests and the conditions for which they screen, and links to other related sites.
Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children
This federal advisory committee makes recommendations about newborn screening policy, including which conditions should be included in newborn screening panels.
See all Newborn Screening Programs services providers (3) in our database.
For other services related to this condition, browse our Services categories or search our database.
Kemper AR, Boyle CA, Aceves J, Dougherty D, Figge J, Fisch JL, Hinman AR, Greene CL, Kus CA, Miller J, Robertson D, Telfair
J, Therrell B, Lloyd-Puryear M, van Dyck PC, Howell RR.
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.
Genet Med. 2008;10(4):259-61. PubMed abstract
Kemper AR, Uren RL, Moseley KL, Clark SJ.
Primary care physicians' attitudes regarding follow-up care for children with positive newborn screening results.
Pediatrics. 2006;118(5):1836-41. PubMed abstract
Tarini BA, Clark SJ, Pilli S, Dombkowski KJ, Korzeniewski SJ, Gebremariam A, Eisenhandler J, Grigorescu V.
False-positive newborn screening result and future health care use in a state Medicaid cohort.
Pediatrics. 2011;128(4):715-22. PubMed abstract / Full Text
Communicating with parents about newborn screening: the skill of eliciting unspoken emotions.
Arch Pediatr Adolesc Med. 2012;166(1):95-6. PubMed abstract
|Author:||Chuck Norlin, MD - 4/2007|
|Reviewing Author:||Nicola Longo, MD, PhD - 4/2007|
|Content Last Updated:||4/2015|
Cooley WC, Kemper AR.
An approach to family-centered coordinated co-management for individuals with conditions identified through newborn screening.
Genet Med. 2013;15(3):174-7. PubMed abstract