The “ECFSPR” is a registry holding data on CF patients throughout the European Union and some of the neighbouring countries over an extended period of time.

Registry data are collected for lots of reasons: to increase the knowledge on CF, to determine clinical effectiveness of health care, for comparing and improving standards of care for CF patients, to support health care service planning and for research purposes.

Collecting data from many countries and centers (in the latest report more than 20,000 patients from 16 countries) gives us the opportunity to compare between CF centers and countries, but also to prepare the landscape for possible clinical trials once new potential treatments arise for example to ensure a sufficient number of patients for research in rare complications, infections or specific genotypes.

As you may now, CFE has 2 patient representatives in the Registry, Angeliki Preftitsi and Ulrike Pypops.

One of the projects they worked on is informing the patients, the first stakeholders, about what the Registry is and how it works.

This info is now available online on the Registry website: http://www.ecfs.eu/projects/ecfs-patient-registry/information-about-ecfspr-cf-patients

Take a look here, it’s good to know more about the Registry, it’s a project that can help patients and associations all over Europe!

Let us know if you have any additional questions or comments and if you would like to see other info on the site for instance.