The International ERN LUNG Meeting on Primary Ciliary Dyskinesia (PCD) took place in Nicosia, Cyprus between 10th and 12th of April 2024. The Meeting was jointly organized by the University of Cyprus, the University of Münster, the Copenhagen University Hospital – Rigshospitalet and the ERN LUNG PCD Core Clinical Trial Network and brought together scientists from across the world to share their advances in PCD diagnosis, research, and clinical care.
The Meeting was attended on-site by more than 150 clinicians, scientists, patients, and pharmaceutical industry representatives from 28 countries with more than 40 of them being early career professionals. Another 60 participants were able to attend the meeting online via videoconference.
The kick-off of the Meeting took place on the evening of Wednesday April 10th at the Bank of Cyprus Cultural Center at the heart of the historical center of Nicosia. Following welcome notes from the local hosts, the opening session included a talk by archaeologist and art historian Mrs. Anna Marangou on the history of Nicosia over the centuries and a plenary lecture on the role of nodal cilia to break left-right asymmetry by Professor Hiroshi Hamada.
The 2nd and 3rd day agenda of the Meeting included a very stimulating scientific program that was hosted at the premises of the Medical School of the University of Cyprus. During the 2nd day, the morning session focused on the discrepancies between European and North American PCD diagnostic guidelines and included the presentation of the advantages and limitations of current diagnostic tools for PCD. The morning session also included talks of complex PCD phenotypes including non-ciliary and syndromic characteristics, the introduction of the consensus statement on immunofluorescence (IF) and was concluded with five oral talks, selected from the more than 25 abstracts submitted to the Meeting. All other abstracts were presented as posters during a dedicated poster session on the same day.
In the afternoon, following a short update on ERN-LUNG activities, presentations focused on ERN-LUNG ongoing and future observational studies, including presentations on the first results of the prospective PCD exacerbations and the retrospective familial concordance study. Several future studies were proposed, including studies based on the ERN-LUNG International PCD registry on lung function, nasal nitric oxide (nNO) production rates and airway microbiology, as well as a prospective study on the natural history of PCD. The day was completed with an interactive presentation by ERN LUNG PCD core coordinator Professor Heymut Omran and discussions on key performance indicators and the role of diagnostic tools towards the development of an updated ERN LUNG PCD Core statement on the diagnostic approach for PCD. The 2nd day closed with the announcement of the three prizes for the best posters and the social dinner. The winners of the three poster prizes were Janne Renders (University of Leuven), Anne Schlegtendal (Ruhr University Bochum) and Julia Koenig (University Children’s Hospital Muenster).
On the 3rd day, the focus shifted on the activities of ERN-LUNG PCD-CTN and opened with a short update given by PCD-CTN coordinator Professor Kim G. Nielsen. The first session included presentations of findings of non-interventional studies focusing on clinical outcomes in PCD, followed by presentations of preclinical investigations and plans for future clinical trials for mRNA-based therapies. The second session of the day focused on conventional clinical trials in PCD and included presentations of the CLEAN-PCD, HELP-PCD and REPEAT clinical trials. The session was concluded by presentations on the new developments in non-CF bronchiectasis and related clinical trials involving PCD patients, such as the AIRLEAF and other studies, providing an overview of the clinician’s experiences from the ongoing studies.
The main part of the Meeting was concluded by closing remarks by Professor Yiallouros on behalf of the organizing committee and by Gergely Mészáros on behalf of the patient representatives at the ERN LUNG leadership.
In the afternoon, participants had the opportunity to attend three workshops on-site. The first workshop was on PCD diagnostic techniques (nNO, High Speed Video Microscopy, Transmission Electron Microscopy, IF and genetics) for early career scientists with hands on demonstrations, the second was focused on Multiple Breath Washout (MBW) training for clinical trials and was organized by the PCD-CTN training committee and the third one was on Patient Oriented Research (POR) and focused on patient-identified research priorities.
The Meeting was overall a great success. A high number of international senior scientists and early career professionals in the field of PCD engaged in the proceedings and delivered state-of-the-art presentations and discussions. For the first time pharma industry stakeholders made direct contributions in the scientific program, advancing further the links between ERN-LUNG and the industry, while actively involving patients and their families in the deliberations. Last but not least, the International ERN-LUNG meeting on Primary Ciliary Dyskinesia further enhanced the role of ERN-LUNG as an interactive network of experts in PCD promoting excellence in clinical care and research and opened the pathway for the next ERN-LUNG PCD Core meetings on an annual basis.
