Cystic fibrosis remains the most common, life-threatening, hereditary disease in the United States. One in 2,300 American children is born with CF. At any given time there are more than 1,500 undiagnosed children with CF, and a significant number of children, adolescents, and adults are diagnosed late, despite symptoms due to cystic fibrosis. With these facts in mind, Dr. Gerd J. Cropp, M.D., Ph.D, Pediatric Pulmonologist and Director of the CF Treatment Center at the University of California at San Francisco, emphasized at a presentation sponsored by CFRI last month the need to establish routine newborn screening tests.
Early diagnosis, and consequently, early treatment of disease, is the goal of newborn screening. Without newborn screening, the median age (half are younger, half older) at diagnosis of all patients is 7-8 months; the median age of diagnosis of symptomatic patients without meconium ileus (intestinal blockage occurring at birth) is 13 months. At 10 years of age, 10% of CF patients still are not yet diagnosed. Detecting CF by screening infants allows for treatment to be initiated in the newborn period rather than after symptoms appear, and before irreversible damage has occurred. Early intervention and treatment improve growth and nutritional status that might otherwise never be attained, decreasemorbidity, delay the onset of airway disease and aid families in adapting to the diagnosis and treatment of CF.
Dr. Cropp discussed actions being taken at the state level. The state of California soon will consider whether to adopt a newborn screening test for cystic fibrosis. Wisconsin and Colorado, as well as Australia and several other countries, already perform routine newborn screening tests to detect cystic fibrosis.
A videotape of Dr. Cropp's talk is available for rent or purchase from the CFRI office. Call CFRI and let us know if you want to rent ($5) or purchase ($10) the videotape. We hope to eventually send out a survey on newborn screening to determine the opinions of our constituency. We urge you to respond.
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