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. 

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 10 members, including Belgium, France, Germany, Ireland (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 four times a year (in person at the ECFS conference in June and the ECFS winter meeting in January, and online in spring and autumn) and reports to the CFE  Board. CFE members are updated on the PORG’s activities and strategic objectives during the annual general meeting, on the website and in regular newsletters. Below, you can also find the PORG’s meeting summaries.  

PORG initiatives

Beyond advising CF Europe’s research strategies, there are some distinct anual PORG activities and initiatives:

European Young Investigators meeting  

The European Young Investigator’s Meeting (EYIM), initiated in 2006 as a German-French collaborative event, is currently organized by seven countries (Belgium, Switzerland, the Netherlands, Germany, France, Ireland, 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 recently developed EYIM information sheet can be used to inform your local CF community about this initiative. EYIM took place from 25 till 27 February 2026. You can find the full programme of EYIM 2026 here.

The next edition of EYIM will take place from February 24th to 26th 2027. Keep an eye out for the call for abstracts in September.

 

ECFS Basic Science Conference: patient organisation symposium  

Since 2023, CF Europe has the opportunity to organise a symposium that is part of the official ECFS Basic Science Conference programme. The aim of the symposium is to foster networking between researchers, clinicians and patient organisations on topics that are considered a priority by people with CF, and initiate international collaborations to speed up the development of new CF therapies and diagnostic tools. The symposium is prepared by the patient organisations of Germany, the Netherlands, Belgium, France and the UK, in close collaboration with the chairs of the Basic Science Conference. It replaces the preconference meetings that were held since 2012.

The titel of the 2026 symposium was ‘Vascular and cardiovascular complications’. The session covered changes in the cardiovascular system, as well as vascular changes in the lungs and brains, and why it is important. To kick the session off, Paula Sommer, PORG member for the UK, presented the results from a survey circulated to the CF community across Europe to ascertain their worries about cardiovascular health. There were over 180 responses to the survey in several different languages with the survey results showing that people with CF, regardless of their age, were concerned about their cardiovascular health and had specific questions. Overall, the symposium highlighted the need to include heart, blood vessels and brain more closely in CF research and care to better protect long-term health. You can find the detailed program of the symposium here.

ECFS/CF Europe postdoctoral research fellowships

With the aim to foster basic and translational research on CF, ECFS and CFE joined forces in 2020 to support 3 European post-doctoral 2-year research fellowships. Over the years, CFE and ECFS have jointly funded 8 fellowships, thereby contributing to stimulating highly qualified young researchers to pursue a career in CF research.

For an overview of the supported postdoctoral fellows, and for a glimpse of their research, please visit our “get involved” page. The next call for candidacies will be announced in autumn, so make sure to keep an eye on our website and social media. For more information on the procedure, visit the ECFS website.

ECFS Patient Registry (ECFSPR)

The European Cystic Fibrosis Society (ECFS) Patient Registry collects patient data that are valuable to CF clinical caregivers and researchers, however, the value of these data to people with CF is not often clear. CF Europe is a member of the Patient Registry’s Executive Committee, ensuring that patients and their families benefit both directly and indirectly from the information collected and analysed by the Patient Registry. CF Europe also sits on the Scientific Committee of the Patient Registry.  You can find out more about what it means for people with CF to be part of the registry here.  

Each calendar year in May, the Patient Registry publishes a detailed Annual report with demographic and clinical data about people with CF who consent to participate in the registry.  CF Europe contributes to the design of this report, and also to the publication of a shorter Highlights report, which is normally available 6 months earlier.  The Highlight Reports were designed for people with CF, their families and healthcare team members so that they have more immediate access to the most significant information. In 2026 we also included an online version of the highlights that can be consulted directly. In addition to this, 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.  In addition to the reports, on the ECFSPR website you can also find a series of powerpoint slides of the tables, graphs and figures from each annual report that can be downloaded and used by anyone, and a list of abstracts and published articles based on the registry data.

On the registry’s News page you will also find updates about the EHDS and the registry’s preparation for its introduction.  The EHDS – the European Health Data Space will eventually affect everyone who lives in the European Union and has special significance for people with CF.  The initiative “establishes a common framework for the use of electronic health data, supporting both clinical care (“primary use”) and research, innovation, and policy development (“secondary use”).  It aims to:

  • Empower patients with greater control over their health data
  • Enable cross-border access to health information
  • Facilitate high-quality research and evidence-based decision-making
  • Strengthen collaboration across European healthcare systems

The European Health Data Space represents a significant step forward for digital health in Europe, offering new opportunities for collaboration, innovation, and improved care.

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. They do this by supporting clinical trials, for example by connecting sponsors with clinical trial sites for feasibility checks and by reviewing study protocols. These reviews are carried out not only by physicians and researchers, but also by people with CF and parents. They also provide training for clinical trial staff and help standardise procedures used in clinical trials. Each year, the CTN publishes its comprehensive annual report.

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 and is important in carrying out research that is prioritised by people with CF. CF Europe and the CTN also work closely together on specific projects such as the glossary. This is a list of terms that are often used in clinical trials, with a short, easy-to-understand explanation provided for each term. In this way, we aim to help bridge the gap between patients and clinical research.