Newborn Screening
Newborn Screening is a public health program used to identify newborns at high risk for a number of genetic conditions - most of them rare. Generally, if these conditions are not detected within the first few days of life there can be grave consequences for the child's health, including mental retardation or death. As technology advances, so does the opportunity for screening a range of conditions during the newborn period.
National Newborn Screening Clearinghouse
Genetic Alliance, the National Newborn Screening and Genetics Resource Center, and other partners received a cooperative agreement from the Genetics Services Branch of the Maternal and Child Health Bureau, HRSA/HHS to develop the nation's first clearinghouse of newborn screening (NBS) information. The clearinghouse will increase awareness of NBS for expectant and new parents, health professionals, industry representatives, and the public. This 5-year project will connect state and regional public health groups and facilitate data and resource sharing.
Consumer Focused Newborn Screening Projects
This project is supported through a cooperative agreement from the Genetic Services Branch of the Maternal Child Health Bureau/HRSA/DHHS. As newborn screening programs expand throughout the country, it is vital to understand the spectrum of consumer viewpoints. Genetic Alliance, in partnership with the University of Maryland School of Medicine and the Genetics and Public Policy Center, is looking at consumer perspectives on inherent issues in newborn screening.
Consumer Taskforce on Newborn Screening (CTF - NBS)
As part of the Consumer Focused Newborn Screening Project, a group of parents convene numerous times a year to discuss ways of getting more consumers involved in newborn screening. The CTF-NBS includes parents who are experienced in various aspects of the NBS system in addition to those who are just starting to navigate these issues.
Stay current on developing national legislation affecting newborn screening.
Click here for a list of government, research, and advocacy groups focused on newborn screening.
