CPHI is partnering with investigators from the cystic fibrosis community and NewSTEPs on a multi-year national grant to evaluate cystic fibrosis newborn screening in the United States.

This project will connect state newborn screening program metrics to CFF care center metrics. We are reviewing the last decade of universal newborn screening for CF in the U.S., describing the epidemiology of infants with CF who were identified by NBS, and then testing for associations between NBS programs and the CF Center outcomes.

We will also be initiating focus groups and key informant interviews to identify successes and challenges within the CF newborn screening system, ranging from algorithms, result notification, sweat test availability and performance, and communication between the programs.