Optimism, opportunities, outcomes: the Australian Cystic Fibrosis Data Registry

Abstract

The Australian Cystic Fibrosis Data Registry is positioning itself as an exemplar of a rare disease registry for the future. While it continues to inform cystic fibrosis (CF) clinicians of patterns of CF disease and quality of care, its capability is increasing as a resource for further research into CF subpopulations, as a platform for clinical trials, and as an interface for patient experiences.

Keywords: clinical trial; cystic fibrosis; patient-reported outcome; quality improvement; registry; research.