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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 flucloxacillin as a long-term anti-Staphylococcal prophylaxis in young children agent for infants with CF in comparison with targeted therapy and CF Storm (www.cfstorm.org.uk) a randomised open-label trial assessing the impact of withdrawing inhaled mucolytics for patients taking the new cystic fibrosis transmembrane conductance regulator (CFTR) modulator, elexacaftor/tezacaftor/ivacaftor. Registries can assist with benchmarking between centres to help with quality improvement projects. International comparisons also …
Funding The author has not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Commissioned; externally peer reviewed.