The Network
The BEAT-PCD network has developed over time through a series of increasingly integrated European collaborations. It began with two European Respiratory Society (ERS) Task Forces (2006–2009 and 2014–2016), which helped define key clinical and research priorities in primary ciliary dyskinesia (PCD). This was followed by the FP7-funded BESTCILIA project (2012–2015), which advanced diagnostic tools and strengthened data collection across Europe. The EU COST Action BEAT-PCD (2015–2019) then established a multidisciplinary European network of researchers, clinicians, allied health professionals, and patient representatives spanning 27 countries. Building on this foundation, two successive ERS Clinical Research Collaborations (CRC 2020–2023 and 2023–2026) have further consolidated and expanded this network into its current form. Together, these initiatives have significantly improved awareness, diagnosis, and clinical care for PCD. However, important challenges remain, including the complexity and unequal access to diagnosis across countries, and the fact that most treatments are still based on expert opinion or extrapolated from other respiratory diseases such as cystic fibrosis rather than PCD-specific evidence.
The BEAT-PCD CRC 2026–2028 will continue this progression by building on the achievements of the previous CRC periods to further strengthen collaboration and advance clinical and translational research in PCD.
Aims
Improve and standardise diagnosis and clinical care
Expand and develop further available research resources, including also in neglected areas
Set a framework for clinical trials
Engage PCD patients in research activities
Develop collaborations with other networks and relevant stakeholders
Work Packages
The BEAT-PCD ERS CRC for 2026–2028 is organized into nine interconnected Work Packages (WPs). These groups work closely together, sharing expertise, projects, and activities to improve research and care for people with primary ciliary dyskinesia (PCD). Researchers, healthcare professionals, patients, and families are encouraged to take part in any activities that match their interests, including across multiple work packages.
The nine work packages are: 1. Project management and coordination; 2. Genetics and inherited causes of PCD; 3. Improving and standardizing PCD diagnosis; 4. PCD biobanks, bioresources, and biomarkers; 5. Developing better ways to measure disease outcomes; 6. Addressing under-researched areas in PCD; 7. Patient and family engagement activities; 8. Improving clinical care and treatment; 9. Communication, education, and sharing research findings
CRC governance
The Management Committee oversees the day-to-day running of the BEAT-PCD ERS Clinical Research Collaboration (CRC). Its role is to ensure that projects are completed to a high standard, delivered on time, and carried out efficiently. The committee also helps resolve challenges that may affect progress and can make operational decisions needed to support the successful delivery of CRC activities. It is made up of the CRC Chairs together with the leads and co-leads of each Work Package (WP). A representative from the European Lung Foundation (ELF) is also invited to attend meetings. In addition, the committee oversees access to CRC data for research publications, following the CRC’s data access and publication policies to avoid duplication and maximize scientific value.
The Steering Board provides strategic advice to the CRC Chairs and helps ensure that CRC activities remain aligned with developments in the field and meet the needs of the wider PCD community. It includes two patient representatives, one representative from each work package, the CRC Communications Officer (Mathieu Bottier), and a representative from the North American PCD consortium.
CRC chairs: Myrofora Goutaki & Amelia Shoemark
Management Committee members: Pinelopi Anagnostopoulou, Mieke Boon, Mathieu Bottier, James Chalmers, Suzanne Crowley, Lucy Dixon, Mafalda De Almeida Gomes, Nagehan Emiralioglu, René Gaupmann, Vasiliki Gkatzou, Myrona Goutaki, Eric Haarman, Claire Hogg, Claire Jackson, Nena Karavasiloglou, Christina Kavouridou, Benedikt König, Panayiotis Kouis, Claudia Kuehni, Marie Legendre, Trini López Fernández, Jane Lucas, Bernard Maitre, Hannah Mitchison, Loretta Müller, Lydia Newman, Tamara Paff, Jean-François Papon, Deepa Patel, Lidia Perea, Johanna Raidt, Phil Robinson, Jobst Roehmel, Felix Ringshausen, Bruna Rubbo, Nisreen Rumman, Amelia Shoemark, Guillaume Thouvenin, Emilie Wattelier, Mine Yüksel Kalyoncu.
