CF Europe is dedicated to stimulating CF research in Europe that is in line with patients’ needs and research priorities. Our strategic work on scientific research is led and coordinated by the Patient Organisations Research Group (PORG), a CF Europe working group formally established in 2016. CF Europe is well connected to the European Cystic Fibrosis Society (ECFS), with active representation in the Executive Committees of the Patient Registry and the Clinical Trials Network. CF Europe is a work package leader for communication and dissemination in the Horizon 2020 HIT-CF Europe project.
ECFS Patient Registry
The European Cystic Fibrosis Society (ECFS) Patient Registry collects patient data that is valuable to CF clinical caregivers and researchers. However, the value of this data to patients is not often clear. CF Europe is a member of the Patient Registry’s Executive Committee, ensuring that patients and their families benefit directly from the information collected and analysed by the Patient Registry. CF Europe also sits on the scientific committee of the Patient Registry.
Each year, the Patient Registry publishes its comprehensive annual report. In order to improve the patient-friendliness of the Patient Registry and make the data accessible to everyone, CF Europe is contributing to several projects, such as the “at-a-glance” annual report and the country-specific posters. These posters compare CF numbers of a specific country to European averages and are translated in the languages spoken in those countries. Furthermore, CF Europe helps to improve the visibility of the ECFS Patient Registry on social media, and is part of the working group to make the regular annual report easier to read and more visually attractive.
For more information, please visit the website of the ECFS Patient Registry.
Clinical trials network (ECFS-CTN)
The aim of the Clinical Trial Network (CTN) is to intensify clinical research in the area of cystic fibrosis and to bring new medicines to people with CF as quickly as possible. CF Europe is a permanent member of the CTN’s Executive Committee, and is also represented in the so-called Investigator-initiated Trial Committee. This working group promotes academic rather than industry-driven research through the CTN (for example the CAR-CF study) and is important in carrying out research that is prioritised by people with CF.
Each year, the CTN publishes its comprehensive annual report. Several PORG members have committed to translating the annual reports. These translations are also available on the website of the CTN.