Defining key outcomes to evaluate performance of newborn screening programmes for cystic fibrosis

•The European Cystic Fibrosis Society (ECFS) Neonatal Screening Working Group (NSWG) aims to monitor the performance of newborn bloodspot screening (NBS) for cystic fibrosis (CF) and compare protocols to optimize effectiveness, whilst reducing negative impact in agreement with published international guidelines. •To improve the collection of data and better enable comparison of the performance of different programmes we established key outcomes...