Lurie Children’s campaign urges parents to follow up right away if newborn screening results are abnormal

(Press-News.org) 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,” said Susanna McColley, MD, an 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. “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.”

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.

Ann & Robert H. Lurie Children’s Hospital of Chicago is a nonprofit organization committed to providing access to exceptional care for every child. It is the only independent, research-driven children’s hospital in Illinois and one of less than 35 nationally. This is where the top doctors go to train, practice pediatric medicine, teach, advocate, research and stay up to date on the latest treatments. Exclusively focused on children, all Lurie Children’s resources are devoted to serving their needs. Research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute, which is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is the pediatric training ground for Northwestern University Feinberg School of Medicine. It is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report.

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