Characteristics | Inclusion criteria and informed consent | Patient identification | Funding | Host institution | |
Danish PCD Registry | National (Denmark), population based. Founded 2006. | Inhabitants of Denmark with definite, highly likely or suspected PCD. Written informed consent needed. | Passive, patients who are referred to the national PCD centre for diagnostic work-up or clinical management. | Hospital based, but various funds have supported part-time management. | Paediatric Pulmonary Service, Dept of Paediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark. www.dblc.dk |
Cyprus PCD Registry | National (Cyprus), population based. Founded 2013. | Inhabitants of Cyprus and neighbouring countries diagnosed or followed-up in Cyprus. Written informed consent needed. | Passive, patients who are referred to the national PCD centre for diagnostic work-up or clinical management. | National research funding (Cyprus Research Promotion Foundation). | Medical School, University of Cyprus, Nicosia, Cyprus. www.ucy.ac.cy/medical |
Swiss PCD Registry | National (Switzerland), population based. Founded 2013. | Inhabitants of Switzerland with definite, highly likely or suspected PCD. Written informed consent needed. | Active, by contacting regularly all specialists (paediatric and adult pulmonologists, ENT physicians, and fertility specialists) and the national patient organisation. | Swiss National Science Foundation, cantonal lung leagues, Foundation Milena Carvajal. | Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland. www.ispm.ch |
Norwegian PCD Registry | National (Norway), population based. Founded 2015. | Inhabitants of Norway with definite or highly likely PCD. Baseline data without informed consent; written informed consent needed to share data. | Passive, by inclusion of patients referred with suspected PCD. Active from September 2019, by contacting regularly all specialists (paediatric and adult pulmonologists, ENT physicians, and fertility specialists). | National Advisory Unit on Rare Diseases. Norwegian Resource Centre for Cystic Fibrosis. | Norwegian Resource Centre for Cystic Fibrosis, Oslo, Norway. www.oslo-universitetssykehus.no/nscf |
English Paediatric PCD Management Service | National (England), clinical cohort. Founded 2012. | Inhabitants of England, aged 0–17 years with definite or highly likely PCD. Written informed consent needed. | Through the National PCD Diagnostic Service, comprised of three centres.# | National Health Service (NHS) England. | National PCD Service; each centre is owner of their patients' data.# |
French RaDiCo-PCD Cohort | National (France), clinical cohort. Founded 2017. | Inhabitants of France with definite PCD. Written informed consent needed. | Active, by contacting regularly all specialists (paediatric and adult pulmonologists, ENT physicians, and fertility specialists) and the national patient organisation. | French National Research Agency under the specific programme “Investments for the Future”. | Inserm UMR S 933 RaDiCo-PCD, Paris, France. www.radico.fr/fr/connaitre-radico/nos-cohortes-et-autres-programmes-associes/80-radico/147-cohorte-radico-pcd |
ENT: ear, nose and throat. #: University Hospital Southampton NHS Foundation Trust, Southampton, UK/Royal Brompton and Harefield Foundation Trust, London, UK; University Hospitals of Leicester NHS Trust, Leicester, UK/Birmingham Children's Hospital, Birmingham, UK; Leeds Teaching Hospitals NHS Trust, Leeds, UK/Bradford Teaching Hospitals NHS Trust, Bradford, UK.