The European Cystic Fibrosis Society (ECFS) has officially launched its renewed digital platform – pr.ecfs.eu, an advanced and user-friendly hub that provides comprehensive access to information and data from the CF Foundation Patient Registry. This initiative marks a major step forward in improving transparency, accessibility, and collaboration within the international cystic fibrosis (CF) community.
About the ECFS Patient Registry
The European Cystic Fibrosis Society Patient Registry (ECFSPR) is one of the world’s largest data repositories dedicated to cystic fibrosis. Established in 2008, it now includes detailed longitudinal data covering the period from 2008 to 2025. The registry currently contains records from more than 54,000 individuals living with CF across 40 countries in the WHO-defined European region.
The CF Registry 2025 enables researchers, clinicians, and healthcare policymakers to analyse trends, assess treatment outcomes, and improve patient care. Through this data, ECFS supports the development of national strategies, advances epidemiological research, and promotes evidence-based healthcare decisions.
Comprehensive Reporting and Annual Data Insights
Each year, the ECFS publishes a detailed CF Patient Registry Annual Data Report, offering a transparent overview of clinical outcomes and demographic changes within the CF population. The CF Annual Report 2025 will continue this tradition, providing the most up-to-date insights into disease prevalence, treatment progress, and emerging challenges across Europe.
In addition to the full reports, ECFS produces Highlights Reports – simplified summaries designed for patients, families, and care teams. These reports help make scientific data accessible to non-specialists, supporting community awareness and shared decision-making.
The new portal at pr.ecfs.eu centralizes these publications, allowing users to browse historical data, download reports, and access visual analytics tools.
A Global Collaboration Platform
While rooted in Europe, the ECFS Registry now extends its reach beyond continental borders. Starting from late 2025, several non-European countries will join the ECFSPR Partnership Project, sharing anonymized patient data to contribute to a broader global understanding of cystic fibrosis.
The Cystic Fibrosis Foundation Patient Registry data remains essential for evaluating treatment quality, supporting public health planning, and driving innovation. With this expansion, ECFS strengthens international research collaboration and ensures that the voice of every CF patient contributes to shaping the future of care.
Access and Participation
All WHO-defined European countries are invited to participate in the ECFS Patient Registry free of charge. Participating centres gain access to an online data-collection platform, training, and analytical support from ECFS specialists.
The platform is built on the principle of open cooperation: by collecting, standardizing, and sharing real-world data, ECFS empowers the CF community to turn information into impact.
For more details and to explore visit the official platform: CF Patient Registry 2025 Annual Report.
