Explore HRSA’s New Newborn Screening Information Center

October 20, 2020

Within the first 24-48 hours after birth, all babies go through a series of state mandated screenings to detect certain serious conditions that can affect their long-term health or survival. Using a few drops of blood from the newborn's heel, newborns are screened for certain genetic, endocrine, and metabolic disorders, and as well receive additional testing to see if they are deaf or hard of hearing and/or have critical congenital heart defects (CCHDs). Newborn screening is important because the earlier a condition(s) can be detected and diagnosed, the sooner a baby can receive treatment and/or intervention. This gives babies the best chance at a healthy life. That’s why almost four million newborn babies are screened each year in the United States.

Health care providers cannot always tell if newborns have a serious health condition just by looking at them, and many babies born with a condition have no family history of it or show signs of it at birth. In fact, most look healthy and even have normal Apgar scores. Once, screened, babies may need further testing to confirm a diagnosis. Screening is important because it checks whether a baby might have a condition, but it cannot determine whether your baby actually has that condition—only if they are more or less likely to have it. In contrast, diagnostic testing tells whether your baby actually has a condition.

To increase awareness, knowledge, and understanding of newborn screening, NICHQ partnered with Genetic Alliance, a national expert in newborn screening to develop a website that delivers general as well as state-specific and condition-specific newborn screening information. The result of this collaboration is the Newborn Screening Information Center, a website with clear and up-to-date information, materials, and resources about newborn screening.

The purpose of the site is to:

  • Define newborn screening, describe the newborn screening process, and explain how that process relates to follow up, diagnosis, and treatment
  • Identify the conditions that states screen for as part of newborn screening
  • List the types of newborn screening results and describe what happens after screening for babies with each type of result
  • Connect parents, parents-to-be, and health care providers with newborn screening resources
  • Help readers learn about updates in newborn screening

Visit the Newborn screening information Center website.

This initiative is funded by the Health Resources and Services Administration. Here, learn more about the Content Development for Newborn Screening Clearinghouse initiative. The Newborn Screening Information Center fulfills the requirement for a newborn screening clearinghouse from the Newborn Screening Saves Lives Reauthorization Act of 2014. The Center includes information about newborn screening, conditions screened and what states screen for within their programs. The Newborn Screening Information Center is not related to Baby’s First Test.

For media inquiries, please contact:
Josh Licursi
Josh Licursi
NICHQ Communications Manager
[email protected] or 617-391-2757