We aim to reduce sweat testing quantity not sufficient (QNS) rates in infants who are referred to Cystic Fibrosis Foundation Accredited Care Centers for follow-up testing after a positive newborn screening (NBS) test. It is important to do this now because there is evidence of both high QNS rates at some centers. Additionally a significant percentage of infants diagnosed with CF through the newborn screening system do not have a confirmatory sweat test reported in the first months of a CF diagnosis. Furthermore, QNS sweat tests can delay the diagnosis and treatment of infants with CF, thus reducing the benefit of newborn screening to individuals, their families, and the public health system. We hypothesize that a structured sweat test performance improvement program focused on collecting adequate sweat specimens from infants will reduce the QNS rate in newborns to less than 10% at participating CF Centers. Our specific aims are: 1. To assure that all staff who perform sweat tests, and their supervisors, receive in-depth education on optimal sweat test collection in infants. 2. To distribute andimplement the use of a Sweat Test Checklist designed to continuously refresh knowledge of optimal techniques for sweat test collection, supporting participating sites in local process improvement using the Checklist as a key tool 3. To build sustainable systems for maintenance of low sweat test QNS rates at participating sites.
Vicky LeGrys email@example.com
Investigators and Key Personnel
PI: Susanna McColley co PI: Vicky LeGrys
Primary Funding Source
Administration for Children, Youth and Families
Funding Source: Cystic Fibrosis Foundation