Using registries to improve cystic fibrosis care

Since their first introduction almost 50 years ago, cystic fibrosis (CF) registries have become an essential tool in improving our understanding of CF. More recently, CF registries have become important in the direct management of CF patients and have been developed to supply detailed information on how CF care is delivered throughout the world. This chapter will focus on the role of CF registries in improving quality of care for patients with CF. We will review the outcome variation and its interpretation in CF and the present and future role of CF patient registries in improving healthcare delivery through benchmarking, pharmacoepidemiology and comparative effectiveness research.