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- Received March 21, 2022
- Accepted May 12, 2022
- Published online June 9, 2022.
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Author Information
- Johanna Raidt1,
- Bernard Maitre2,
- Petra Pennekamp1,
- Josje Altenburg3,
- Pinelopi Anagnostopoulou4,
- Miguel Armengot5,
- Lizan D. Bloemsma6,
- Mieke Boon7,
- Melissa Borrelli8,
- Folke Brinkmann9,
- Siobhan B. Carr10,
- Mary P. Carroll11,
- Silvia Castillo-Corullón12,
- André Coste13,
- Renato Cutrera14,
- Eleonora Dehlink15,
- Damien M. S. Destouches16,
- Maria E. Di Cicco17,
- Lucy Dixon18,
- Nagehan Emiralioglu19,
- Ela Erdem Eralp20,
- Eric G. Haarman21,
- Claire Hogg10,
- Bulent Karadag20,
- Helene E. Kobbernagel22,
- Natalie Lorent7,
- Marcus A. Mall23,24,25,
- June K. Marthin22,
- Vendula Martinu26,
- Manjith Narayanan27,
- Ugur Ozcelik19,
- Daniel Peckham28,
- Massimo Pifferi17,
- Petr Pohunek26,
- Eva Polverino29,
- Simon Range30,
- Felix C. Ringshausen31,
- Evie Robson28,
- Jobst Roehmel23,
- Sandra Rovira-Amigo32,
- Francesca Santamaria28,
- Anne Schlegtendal9,
- Zsolt Szépfalusi15,
- Petra Tempels33,
- Guillaume Thouvenin34,
- Nicola Ullmann14,
- Woolf T. Walker11,
- Martin Wetzke31,
- Panayiotis Yiallouros4,
- Heymut Omran1 and
- Kim G. Nielsen22⇑
- 1Department of General Pediatrics, University Hospital Muenster, Muenster, Germany
- 2Service de Pneumologie, Hôpital Henri Mondor et Centre Hospitalier Intercommunal de Créteil, Assistance Publique-Hôpitaux de Paris, Créteil, France
- 3Department of Pulmonology, Amsterdam UMC, location AMC, Amsterdam, Netherlands
- 4Medical School, University of Cyprus, Nicosia, Cyprus
- 5ENT Department, La Fe Polytechnic and University Hospital; Surgery Department, University of Valencia; CIBER of Rare Diseases (CIBERES), Carlos III Health Institute, Ministry of Science and Innovation, Valencia, Spain
- 6Department of Respiratory Medicine, Amsterdam UMC, University of Amsterdam, Amsterdam, Netherlands
- 7Dept of Pediatrics, University Hospital Leuven, Leuven, Belgium
- 8Pediatric Pulmonology, Dept of Translational Medical Sciences, Federico II University, Azienda Ospedaliera Universitaria Federico II, Naples, Italy
- 9Department of Paediatric Pulmonology, University Children's Hospital of Ruhr University Bochum at St. Josef-Hospital, Bochum, Germany
- 10PCD Centre and Department of Paediatric Respiratory Medicine, Royal Brompton Hospital & NHLI, Imperial College, London, United Kingdom
- 11Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, United Kingdom
- 12Paediatrics Pulmonology Unit, Hospital Clínico Universitario Valencia, Valencia, Spain
- 13Service d‘ORL, Hôpital Henri Mondor et Centre Hospitalier Intercommunal de Créteil, Assistance Publique-Hôpitaux de Paris, Créteil, France
- 14Pediatric Pulmonology and Respiratory Intermediate Care Unit, Sleep and Long Term Ventilation Unit, Academic Department of Pediatrics (DPUO), Bambino Gesù Children's Hospital, IRCCS, Rome, Italy
- 15Division of Pediatric Pulmonology, Allergology, and Endocrinology, Dept of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
- 16ADCP: association des Patients Ayant une Dyskinésie Ciliaire Primitive, Saint Etienne, France
- 17Pulmonology and Allergology Section, Unit of Pediatrics, Pisa University Hospital, Pisa, Italy
- 18Chair of PCD Support UK, United Kingdom
- 19Department of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, Turkey
- 20Division of Pediatric Pulmonology, Pendik Training and Research Hospital, Marmara University, Istanbul, Turkey
- 21Department of Pediatric Pulmonology, Emma Children's Hospital, Amsterdam UMC, location VUmc, Amsterdam, Netherlands
- 22Danish Primary Ciliary Dyskinesia Centre, Paediatric Pulmonary Service, Department of Paediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet – Copenhagen, Denmark
- 23Department of Pediatric Respiratory Medicine, Immunology and Critical Care Medicine, Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany
- 24Berlin Institute of Health (BIH) at the Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin, Germany
- 25German Center for Lung Research (DZL), associated partner, Berlin, Germany
- 26Department of Paediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, Prague, Czech Republic
- 27PCD Diagnosis and Research, Department of Respiratory Sciences, University of Leicester, Leicester, United Kingdom
- 28Primary Ciliary Dyskinesia Management Centre, Leeds Teaching Hospitals NHS Trust, Leeds, United Kingdom
- 29Pneumology Department, Hospital Universitari Vall d'Hebron, Vall d'Hebron Institut de Recerca (VHIR), Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain
- 30Department Respiratory Medicine, University Hospitals of Leicester, Leicester, United Kingdom
- 31Dept of Respiratory Medicine, Hannover Medical School (MHH) and German Center for Lung Research (DZL), Hannover, Germany
- 32Department of Pediatric Pulmonology, Hospital Universitari Vall d'Hebron, Vall d'Hebron Institut de Recerca (VHIR), Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain
- 33Kartagener Syndrom & Primäre Ciliäre Dyskinesie e. V., Hannover, Germany
- 34Pediatric Pulmonology Department, Reference Center for Rare Lung Diseases (RespiRare), Armand Trousseau Hospital, Assistance Publique Hôpitaux de Paris (AP-HP), Paris, France
- Corresponding author: Kim Nielsen (kim.g.nielsen{at}regionh.dk)
Funding
Instituto de Salud Carlos III
FIS PI19/00949Registry Warehouse
Horizon2020 GA 777295Deutsche Forschungsgemeinschaft
OM6/7, OM6/8, OM6/10, OM6/14; CRU 326 subprojectsInterdisziplinaeres Zentrum für Klinische Forschung Muenster
Om2/009/12, Om2/015/16, Om2/010/20Danish “Children's Lung Foundation” (Børnelungefonden)
Charles University Grant Agency
670119PBESTCILIA
EU FP7 GA 305404Bundesministerium für Bildung und Forschung
82DZL009B1RadiCONetwork (Inserm, France)
Ministry of Health of the Czech Republic
NV19-07-00210