The use of a cystic fibrosis patient registry to assess outcomes and improve cystic fibrosis care in Germany.

PURPOSE OF REVIEW: Cystic fibrosis (CF) patient registries have become an important epidemiological tool for demography, networking, and quality management. This review describes recent developments in patient registries, outcome research, and pilot projects in quality improvement.

RECENT FINDINGS: National and international CF registry efforts have been producing consolidated data. Classical outcome indicators describing nutritional status and lung function are now being used in a more precise way, based on body mass index percentiles and longitudinal data. Projects involving single centers and quality groups, such as the German benchmarking project, have been showing that quality improvement is possible and that negative developments do not necessarily have to be accepted in CF.

SUMMARY: CF provides a model of the link between healthcare delivery and outcomes in patients. CF registry data can be used to improve quality in CF healthcare. Quality improvement is a continuous endeavor involving the reinforcement of standards and programs as well as individual attitudes and soft skills. One particularly powerful technique is benchmarking, that is, learning from the best.