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.
NICHQ Study on Promoting Infant Safe Sleep and Breastfeeding During the COVID-19 Pandemic was Published by Nursing for Women’s Health
BOSTON – Maternity Care Clinicians’ Experiences Promoting Infant Safe Sleep and Breastfeeding During the COVID-19 Pandemic details findings from a study led by NICHQ researchers of maternity care services of 10 U.S. hospitals from April through September 2020. Participants were asked about challenges and opportunities promoting infant safe sleep and breastfeeding during the pandemic. Published: March 10, 2023 | Nursing for Women's Health
NICHQ Study on Community Promotion of Safe Sleep and Breastfeeding Published by BMC Public Health
BOSTON – Community-based approaches to infant safe sleep and breastfeeding promotion: a qualitative study, led by the National Institute for Children’s Health Quality (NICHQ), details opportunities and challenges to improve community-level promotion of infant safe sleep (ISS) and breastfeeding in communities vulnerable to infant safe sleep and breastfeeding disparities. Published: March 7, 2023 | BMC Public Health
NICHQ Names Dr. Zsakeba Henderson Senior Health Advisor
Dr. Zsakeba Henderson will join the National Institute for Children’s Health Quality as a Senior Medical Advisor, where she will advise NICHQ President and CEO Scott D. Berns, MD, MPH, FAAP, to help advance the work of the organization to ensure every child achieves their optimal health.
NICHQ Creates Department of Health Equity Innovation to Address Systemic Health Inequities
BOSTON – The National Institute for Children’s Health Quality (NICHQ) recently launched a new Health Equity Innovation Department, led by VP of Equity Innovation Stacy Scott, PhD, MPA, with the goal of accelerating strategies that address systemic health inequities. Some of the ongoing work the Health Equity Innovation Department will support is the Equity Systems Audit Tool, co-created by NICHQ and the Global Infant Safe Sleep (GISS) Center to assess implicit and explicit bias in healthcare systems. The department will also support internal equity engagement and support existing projects to ensure they are effectively incorporating equity. New projects related to health equity will be identified and prioritized within the next few months.
NICHQ to Continue Serving as Coordinating Center for the National Network of Perinatal Quality Collaboratives (NNPQC)
The National Institute for Children’s Health Quality (NICHQ) will serve as the coordinating center for the National Network of Perinatal Quality Collaboratives (NNPQC), a five-year cooperative agreement funded by the Centers for Disease Control and Prevention (CDC). As a continuation and expansion upon the last five years, NICHQ will support Perinatal Quality Collaboratives (PQCs) in their efforts to reduce maternal and infant morbidity and mortality, improve perinatal health outcomes, and reduce disparities using quality improvement (QI) methods integrated with a health equity approach.
NICHQ Manuscript on Social-Emotional Screening Published by BMJ Open Quality
BOSTON – A NICHQ-authored manuscript about integrating social-emotional screening at well-child visits was published online on June 11, 2021 by BMJ Open Quality. "Promoting social-emotional development during the pediatric well-child visit: a demonstration project" details how a quality improvement approach increased the number of children from birth to age 3 years who received age-appropriate social-emotional developmental screens or assessments at well-child visits.