Lurie Children's launches campaign to raise awareness of newborn screening

Ann & Robert H. Lurie Children's Hospital of Chicago launched a newborn screening awareness campaign, with signage on public transit and billboards across Chicago urging parents to contact their child's pediatrician immediately if results are out of normal range. For some conditions, such as cystic fibrosis, that are included in newborn screening, timely diagnosis and early treatment are key to optimal health, while delays can lead to more severe disease.

All U.S. states screen for at least 33 metabolic and genetic disorders using blood spots collected in the first days of life. Pre-symptomatic treatment of identified conditions is the overarching goal of newborn screening.

Follow-up is crucial if newborn screening results are abnormal, even though many babies with positive results are perfectly healthy. In the case of cystic fibrosis, a genetic disorder that causes problems with digestion and breathing in people of all backgrounds, research shows that earlier diagnosis is essential to avoid early malnutrition and worse pulmonary function."

Susanna McColley, MD, internationally recognized expert in cystic fibrosis newborn screening, pediatric pulmonologist at Lurie Children's and Professor of Pediatrics at Northwestern University Feinberg School of Medicine

The awareness campaign, which also includes digital ads, is informed by results from a national survey led by Lurie Children's, which found that parents have insufficient knowledge about newborn screening in general and cystic fibrosis in particular. Overall, just over half of parents reported that they knew which conditions are included in newborn screening tests (51 percent), that false-positive results were possible (58 percent), and that false-negative results also were possible (54 percent). About half of survey respondents did not know that cystic fibrosis was included in newborn screening tests (52 percent). Parents also reported difficulties in understanding abnormal newborn screening results and uncertainty as to what to do next.

"We are encouraging parents to be proactive, know their baby's screening results, discuss what they mean with their pediatrician, and make sure that the baby receives a diagnostic evaluation right away if a potential disease is identified," said Dr. McColley.

Dr. McColley discusses newborn screening and her work promoting equity in early diagnosis and care for cystic fibrosis on the In Pursuit podcast from Stanley Manne Children's Research Institute at Lurie Children's.

The campaign is funded by a grant from the Centers for Disease Control and Prevention (CDC) to Lurie Children's and led by Dr. McColley.