Baby’s First Test increases awareness and knowledge of Newborn Screening (NBS) and improves the informed decision-making capacity of NBS stakeholders. This comprehensive resource includes:

• General NBS information for parents and providers
• Condition specific information
• State specific NBS information
• Family stories and experiences who have been impacted by NBS

Project Overview
For more than 40 years, almost every infant born in the U.S. has been screened for an increasing number of genetic and heritable conditions at birth. Each condition included in these newborn screening (NBS) programs has an available, efficacious treatment that can significantly improve a child’s health outcomes if his/her condition is identified early. Parents often are unaware of the number and types of screening that their children receive or the fact that NBS programs vary from state to state. Furthermore, the rapid expansion of NBS is outpacing public education efforts and policy development. A central resource that provides quality information in an accessible and meaningful way to help parents and family members of newborns, health professionals, industry representatives, and the public navigate the NBS system is critically needed.

To address this concern, Congress passed the Newborn Screening Saves Lives Act—a bill that expands support for NBS programs in states, as well as research and education opportunities—in 2008. The bill called for the establishment of a clearinghouse of NBS information. In September 2009, Genetic Alliance and partners were awarded the cooperative agreement to establish the nation’s first Newborn Screening Clearinghouse, Baby’s First Test, connecting millions of parents and healthcare providers with resources and information relevant to more than 4 million newborns screened annually.

Additional Resources
Baby’s First Test website
Click here to read more about the recent progress on the NBSC.

This project is funded by the Health Resource and Service Administration (HRSA), Grant no. U36MC16509, Quality Assessment of the Newborn Screening System. The content of this webpage is solely the responsibility of Genetic Alliance and does not necessarily represent the official views of HRSA.