The European Cystic Fibrosis Society (ECFS) has unveiled its renewed online platform, a central hub dedicated to sharing, analysing, and visualising cystic fibrosis (CF) data across Europe and beyond. The platform offers easy access to demographic and clinical insights from the CF Foundation Annual Data Report, empowering clinicians, researchers, and patients with transparent, up-to-date information.
A Unified Source of CF Knowledge
The European Cystic Fibrosis Society Patient Registry (ECFSPR) is one of the most comprehensive databases of its kind, currently holding data from over 54,000 individuals in 40 countries. Since its creation in 2008, it has become a key resource for understanding the evolution of CF care, providing a solid foundation for epidemiological studies, health policy planning, and clinical improvements.
The CF Registry 2025 continues this mission by collecting and standardizing data across Europe, offering valuable insights into patient outcomes, therapeutic trends, and demographic changes.
Annual Data Reports and Highlights
Every year, the ECFS publishes the CF Patient Registry Annual Data Report, presenting detailed statistics on CF demographics, treatments, and clinical outcomes. The upcoming CF Annual Report 2025 will build upon years of longitudinal research, offering a comprehensive view of patient well-being and advancements in CF management.
In addition to the full reports, ECFS produces Highlights Reports, which summarize the most important findings in accessible language for patients, families, and healthcare professionals. This ensures that essential information reaches everyone — from medical researchers to those living with cystic fibrosis.
Expanding the Global CF Community
The ECFS Patient Registry is now entering a new phase of international collaboration. Beginning in late 2025, several non-European countries will join the initiative under the ECFSPR Partnership Project, further expanding the reach of the cystic fibrosis foundation patient registry network. This global partnership will enhance the quality and diversity of CF data, facilitating new discoveries and evidence-based approaches to care.
Accessible, Transparent, and Collaborative
Participation in the ECFS Patient Registry is free for all countries within the WHO-defined European region. The platform provides secure online data entry, professional support, and analytical tools for participating centres.
The goal is clear: to transform data into actionable insights that improve lives. Through collaboration and transparency, the ECFS strengthens the global CF community and paves the way for better outcomes in cystic fibrosis care.
For more information and to explore the CF Registry 2025 Annual Data Report, visit the official portal at pr.ecfs.eu
