Research
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.
PORG
The Patient Organisations Research Group (PORG) leads the research-related work on the European level. This working group consists of representatives from national CF patient organisations that are actively involved in research and in research funding.
The PORG aims to help facilitate and create partnerships across European member organisations in order to:
- enlarge and stabilise the European CF research network
- accelerate access to new medicines for people with CF through research.
The PORG currently has 11 members, including Belgium, France, Germany, Ireland (new member since 2022), Israel (new member since 2022), Italy, Luxemburg, the Netherlands, Poland (new member since 2022), Switzerland and the UK. The PORG is chaired by Sylvia Hafkemeyer from Mukoviszidose e.V. (Germany). The group meets twice a year (at the ECFS conference in June and the ECFS winter meeting in January) and reports to the CFE Board. CFE members are updated on the PORG’s activities and strategic objectives during the annual meeting, on the website and in regular newsletters.
NEW: PORG “highlights”. Learn more about the topics discussed during the PORG meetings, through our meeting summaries:
PORG Work Packages
The activities of the PORG are organised in work packages:
Patients’ priorities in research
Collaboration with 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 permanent member of the ECFS Patient Registry Executive Committee, ensuring that patients and their families benefit directly from the information collected and analysed by the ECFS Patient Registry.
Collaboration with ECFS Clinical Trials Network
European Young Investigators meeting
The European Young Investigator’s Meeting (EYIM), initiated in 2006 as a German-French collaborative event, is currently organized by six countries (Belgium, the Netherlands, Germany, France, Italy and the UK) which form the EYIM Steering Committee. The meeting takes place annually in Paris in spring, and welcomes about 50 participants: 40 young investigators, selected throughout Europe and 10 senior scientists, who act as moderators for the different conference sessions.
The aims of EYIM are threefold:
- Provide a platform dedicated to young investigators, allowing them to present their work, in English
- Promote networking between young investigators, as well as between young investigators and senior scientists
- Provide opportunity for participants to attend workshops or round tables, where they acquire up to date scientific and clinical knowledge in the field of CF
The latest edition of EYIM took place from 1-3 March 2023 at the Institut National de Jeunes Sourds in Paris. You can find the full programme here.
Basic Science Conference: patient organisation symposium
The aim of this work package is to offer an annual patient organisation-initiated symposium on topics that are considered a priority by people with CF during the ECFS Basic Science Conference. This fosters networking between researchers, clinicians and patient organisations on selected topics and initiate international co-operations to speed up the development of new CF therapies and diagnostic tools.
The titel of the 2023 symposium is ‘Care for rare: precision medicine to bring innovative therapies to people with rare mutations’. The session will not only focus on the science behind precision medicine for people with rare mutation, but will also cover regulatory aspects and the hurdles to get this personalised medicine to those who need it. During the session, a prerecorded testimony from a person living with rare mutations will be shown. The symposium will be chaired by Nicoletta Pedemonte and CF Europe’s Head of Research Elise Lammertyn. It’s not too late to register! Go to the ECFS website for more information.
The symposium is organised by the patient organisations of Germany, the Netherlands, Belgium, France and the UK, in close collaboration with ECFS. Since 2023, it is included in the official Basic Science conference programme. Before that, and since 2012, the session was held under the form of a preconference meeting. The most recent editions, led to a report in the Journal of Cystic Fibrosis. Click here to access them. You can find the program of the 2022 preconference meeting here.
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.
HIT-CF Europe project
HIT-CF Europe
The HIT-CF project (funded by the EU’s Horizon2020 programme) kicked off in January 2018, and aims to provide access to innovative drug candidates for CF patients with rare mutations based on the response in their organoids.
CF Europe is the work package leader for communication and dissemination. To learn more about the project, visit the HIT-CF website. Head to the news feed and newsletters for regular updates.