Newborn Screening: For Patients and Consumers

General Information

• Baby’s First Test is the public face of the Clearinghouse of Newborn Screening Information, which was mandated by the Newborn Screening Saves Lives Act of 2008. It is a vast source of information for the public, as well as a repository of the latest news and statistics related to newborn screening.
• The Centers for Disease Control and Prevention offers much information on screening for and facts about hearing loss in children.
• The Genetics Home Reference guide to newborn screening is a resource of the National Library of Medicine. It not only provides useful information but also includes links to many other resources.
• The March of Dimes has a broad mission to "research the problems that threaten the health of babies." In 2010 alone, it invested $27 million in research. Its website offers in-depth information on a number of conditions included in newborn screening.
• The National Newborn Screening and Genetics Resource Center maintains a useful resource page for parents and families.
• The Newborn Screening Translational Research Network (NBSTRN), established and funded by the NICHD, offers resources and information for parents and consumers.

Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, NIH, or HHS.