Patient registry data highlights international differences in survival in cystic fibrosis

Worldwide, many countries now have well-established national cystic fibrosis (CF) registries that host a wealth of data regarding their patient populations. The investment in developing high-quality registries by the CF community is reaping rewards with these rich datasets proving increasingly valuable resources. Registries are providing important insights in the changing demography of the patient with CF population and such data offers a projection of the future requirements for CF healthcare. Epidemiological research uing registry data is helping to gain an understanding of the complications of CF and assess the impact of interventions over time. National registries are also becoming used as platforms for prospective clinical studies to evaluate the efficacy of clinical interventions. In the UK, the Cystic Fibrosis Trust Registry is currently supporting two large National Institute for Health Research funded studies: CF Start (CF START.org.uk) a randomised trial to assess the safety and efficacy of...
Source: Thorax - Category: Respiratory Medicine Authors: Tags: Thorax Editorial Source Type: research