ABOUT ECFS PR
The European Cystic Fibrosis Society Patient Registry
The information is used to measure, survey and compare aspects of CF and its treatment in participating countries, to deepen our understanding of CF, to improve standards of care, to provide data for epidemiological research and to facilitate public health planning.
Poland
2024
> 57,000 people
The Registry’s database contains data from over 57,000 individuals with cystic fibrosis.
46 countries
It includes information from 46 participating countries.
from 2008
The database holds longitudinal data spanning from 2008 to 2024.
Poland
2024
Resources
Get the latest updates
Science Projects
Explore ECFS PR Programs
Pharmacoepidemiology
Project on monitoring new medicines that must be monitored in pharmacovigilance studies (PMV) in accordance with the rules of the European Medicines Agency (EMA).
Research Projects – Applications
We invite applications from researchers, industry representatives and pharmaceutical partners seeking to leverage these valuable data for scientific research purposes.
The ECFSPR Partnership Project – Beyond Europe
The European Cystic Fibrosis Society (ECFS), in cooperation with the ECFS Patient Registry (ECFSPR), is supporting Cystic Fibrosis (CF) patient registries for low- and middle-income countries (LMICs) outside of the WHO European Region.
CFSPID
Project dedicated to newborn screening for cystic fibrosis. When a newborn screening result is positive, but cystic fibrosis is not confirmed by other methods.
ENRICH
Project to enrich the ECFSPR with longitudinal quantitative structural lung data from chest computed tomography (CT) scans.
Annual report
Discover ECFSPR in 2024 through insights
Discover ECFSPR in 2024 through insights from our Chair and Director, reports on last year’s achievements.
Partners & Sponsors
Collecting and analyzing data is a team effort
Thanks to our valued partners and sponsors, we can advance research and improve outcomes.
Together, we make a difference!