News
News
CentreType
National Registry
General Information
The ECFSPR – European Cystic Fibrosis Society Patient Registry - provides essential population-level data, accessible to people with CF, clinicians, and researchers.
The data are a vital resource for the CF community, supporting quality improvement initiatives and research. By analysing this data, we gain insights into demographic shifts and clinical outcomes. Additionally, the registry facilitates research into questions that may not be easily addressed through controlled trials.
All countries in the geographical area defined as Europe by the World Health Organisation (WHO) can have free access to our online data-collection platform and the assistance and benefits that come from being part of the biggest CF registry in the world. See the map below for some numbers and those who currently contribute data.
From late 2025, some non-European countries will also join us in the ECFSPR Partnership Project.
Data from across Europe
> 54,000 people
The Registry’s database contains data from over 54,000 individuals with cystic fibrosis.
46 countries
It includes information from 46 participating countries.
from 2008
The database holds longitudinal data spanning from 2008 to 2023.
Poland
2024
Support. Knowledge. Future.
Why the ECFSPR exists
The ECFSPR has different objectives but a single aim, which is to ultimately improve the lives of people with Cystic Fibrosis. Improvement means change, and to change anything, first you need to know what you have. This is why the ECFSPR exists: to provide snapshots of different aspects of the disease and how it is managed, to compare them using common criteria, and to provide data that can be used to make a difference.
purpose 01
to measure, survey and compare aspects of cystic fibrosis and its treatment in the participating countries, thereby encouraging new standards of dealing with the disease.
purpose 02
to provide data for epidemiological research.
purpose 03
to identify special patient groups suitable for multi-centre trials.
What is Cystic Fibrosis?
Cystic Fibrosis (CF) is a hereditary genetic disease that affects the lungs, digestive system and other organs in the body. It occurs when an altered gene (the CF transmembrane regulator gene) is passed on to a child from both parents. CF is progressive, which means symptoms gets worse as people get older. There is no cure, but supportive modern treatment and drugs help and survival to middle age is now common; however, availability of treatment and medicines varies greatly from country to country.
The European Cystic Fibrosis Society Patient Registry (ECFSPR) aims to give a reliable and comprehensive picture of CF across the participating countries and to ultimately improve the quality of care in Europe and worldwide. Currently, data about people with CF from 46 countries in the WHO European Region are sent to the ECFSPR and, starting in late 2025, an additional 15 countries from other regions of the world will also contribute through the ECFPSR Partnership Project.
To find out more about CF and what it is like to live with the disease please visit the website of Cystic Fibrosis Europe (CFE). This organisation, the federation of national and regional CF Patient Organisations in Europe, is a close partner of the ECFS Patient Registry and they work tirelessly to ensure that people with CF live to their full potential in society.