Important new publication highlights the value of ECFSPR data for cystic fibrosis research

The ECFS Patient Registry is pleased to share an important new publication in The Lancet Respiratory Medicine, now available online.

This publication highlights the essential contribution of high-quality registry data to cystic fibrosis research. It reflects the strength of collaboration between national CF registries, CF centres, clinicians, researchers and the wider cystic fibrosis community.

For the ECFSPR, this work is another important example of how routinely collected clinical data can be transformed into meaningful knowledge. Registry-based research helps describe the changing landscape of CF, supports epidemiological and public health research, and contributes to improving standards of care for people with cystic fibrosis.

The publication will also be presented during the Special Symposium: “Best of Journal of Cystic Fibrosis, Lancet Respiratory Medicine and European Respiratory Journal”, taking place in Auditorio III+IV on Thursday, June 4, from 15:00 to 16:30 at the ECFS Conference in Lisbon.

We warmly thank all people with CF, families, clinicians, centre teams, national registry teams and collaborators whose continued commitment makes this work possible.

This publication reinforces the central role of the ECFSPR as a trusted European platform for population-level CF data and as a catalyst for collaborative research that can help shape the future of cystic fibrosis care.

Read the full publication here: https://authors.elsevier.com/c/1nC~z7tFB1fJXR