title: The role of National Library of Medicine web sites in newborn screening education.
abstract: Expanded newborn screening programs and subsequent detection of rare genetic disorders challenge parents and their medical providers to learn about the treatment and management of these disorders. Many people seek medical information on the Internet but may encounter requests for registration or fees, or find that resources are out of date, difficult to understand, or buried in advertisements. The U.S. National Library of Medicine (NLM), a component of the National Institutes of Health, provides web-based resources that address the challenges of newborn screening education. These resources include MedlinePlus, Genetics Home Reference, ClinicalTrials.gov, and PubMed. NLM websites are not commercial, do not require registration or fees, and provide varied levels of information for a continuum of audiences from low-literacy consumers to health professionals. Using phenylketonuria as an example, this study describes the information that parents and their medical providers can find through NLM resources. NLM has embraced the digital age and provides the public with reliable, accurate, and up-to-date educational materials.
authors.affiliation: Aspens Systems Corporation, Rockville, Maryland, USA.
authors.forename: Cathy
authors.initials: C
authors.lastname: Fomous
authors.forename: Naomi
authors.initials: N
authors.lastname: Miller
mesh_terms: D005820:Genetic Testing; D006266:Health Education; D006801:Humans; D007231:Infant, Newborn; D008607:Intellectual Disability / Q000209:etiology / Q000235:genetics / Q000517:prevention & control; D020407:Internet; D049293:MedlinePlus; D019212:Multimedia; D009317:National Library of Medicine (U.S.); D015997:Neonatal Screening; D010661:Phenylketonurias / Q000175:diagnosis; D012984:Software; D014481:United States