Newswise — A new report on cystic fibrosis (CF) from Ann & Robert H. Lurie Children’s Hospital of Chicago, in partnership with the Cystic Fibrosis Foundation and funded by the Centers for Disease Control and Prevention (CDC), highlights the need to improve awareness and practice to ensure that all babies with CF are diagnosed as soon as possible. Earlier CF diagnosis is associated with better outcomes, according to the research cited in the report.
CF is a genetic disease that affects breathing and digestion, impacting about 40,000 children and adults in the United States. It occurs in people from all backgrounds and ancestries. When CF was first described in 1938, it was usually fatal in early life. Thanks to improvements in diagnosis and treatment, the median predicted survival is 61 years of age among people with CF born between 2019 and 2023.
The authors point out that nationwide newborn screening for CF has led to diagnosis within the recommended timeframe – in the first month of life – for most babies with CF. However, babies who are Black or African American, Hispanic, Asian, Hawaiian/Pacific Islander or Indigenous (American Indian/Native Alaskan) are often evaluated for CF at a later age than babies who are White and not Hispanic.
One of the reasons that likely contributes to this delay is the long-held misconception that CF only affects White people. Another reason is the possibility of false negative newborn screening results, particularly in Black or African American and Asian infants.
“All babies can have CF and it’s essential that providers and families understand this, since earlier diagnosis can dramatically improve symptoms and ultimately survival,” said report co-author Susanna McColley, MD, researcher and pulmonologist at Lurie Children’s and Professor of Pediatrics at Northwestern University Feinberg School of Medicine. “False negative newborn screening results for CF can occur in babies from all backgrounds and are most likely in Black or African American and Asian babies because CF-causing gene variants differ by ancestry and there are more rare variants that newborn screening panels don’t include. Babies with clinical signs within the first month of life, including bowel obstruction and poor weight gain, should be referred for CF evaluation.”
Research at Ann & Robert H. Lurie Children’s Hospital of Chicago 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 a nonprofit organization committed to providing access to exceptional care for every child. It is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report. Lurie Children’s is the pediatric training ground for Northwestern University Feinberg School of Medicine.
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