International Primary Ciliary Dyskinesia (PCD) Registry

The purpose of the international prospective PCD Patient Registry is to systematically measure, survey and compare different aspects of PCD manifestation, course and treatment, to provide data for epidemiological research and to identify special patient groups suitable for multi-center trials. This International PCD Registry is also part of the European Reference Network ERN-LUNG. We follow the recommendations of the EU Expert Committee on Rare Diseases (EUCERD), which recommend an international interoperability of registries and databases to pool and exchange knowledge and data on rare diseases.

NCT Number	NCT02419365
Lead Sponsor	University Hospital Muenster Collaborators: European Commission, University of Nicosia, Rigshospitalet, Denmark, KU Leuven, Hannover Medical School, Attikon Hospital, Amsterdam UMC, location VUmc, University of Bern, University of Southampton, Royal Brompton & Harefield NHS Foundation Trust, University of North Carolina, Ruhr University of Bochum, Federico II University, Hospital Vall d'Hebron, Medical University of Vienna, Marmara University, University Hospital, Martin, University of Pisa, Assistance Publique - Hôpitaux de Paris, University of Alberta, University of Giessen
Conditions	Primary Ciliary Dyskinesia (PCD)
Enrollment	2,000 participants
Start Date	2014-01
Primary Completion	2030-12 (estimated)
Study Completion	2030-12 (estimated)
Updated on ClinicalTrials.gov	2022-11-28