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vol. 8 no. 3
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History
- Received March 21, 2022
- Accepted May 12, 2022
- Published online August 16, 2022.
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- previous version (June 9, 2022 - 05:05).
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Copyright ©The authors 2022 This version is distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0. For commercial reproduction rights and permissions contact permissions@ersnet.org
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⇑
- 1Dept 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 (AP-HP), Créteil, France
- 3Dept of Pulmonology, Amsterdam UMC, Location AMC, Amsterdam, the Netherlands
- 4Medical School, University of Cyprus, Nicosia, Cyprus
- 5ENT Dept, La Fe Polytechnic and University Hospital, and Surgery Dept, University of Valencia, CIBER of Rare Diseases (CIBERES), Carlos III Health Institute, Ministry of Science and Innovation, Valencia, Spain
- 6Dept of Respiratory Medicine, Amsterdam UMC, University of Amsterdam, Amsterdam, the 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
- 9Dept of Paediatric Pulmonology, University Children's Hospital of Ruhr University Bochum at St Josef-Hospital, Bochum, Germany
- 10PCD Centre and Dept of Paediatric Respiratory Medicine, Royal Brompton Hospital and NHLI, Imperial College, London, UK
- 11Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK
- 12Paediatric Pulmonology Unit, Hospital Clínico Universitario Valencia, Valencia, Spain
- 13Service d'ORL, Hôpital Henri Mondor et Centre Hospitalier Intercommunal de Créteil, AP-HP, 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
- 16Association des Patients Ayant une Dyskinésie Ciliaire Primitive (ADCP), Saint Etienne, France
- 17Pulmonology and Allergology Section, Unit of Pediatrics, Pisa University Hospital, Pisa, Italy
- 18PCD Support UK, Buckingham, UK
- 19Dept of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, Turkey
- 20Division of Pediatric Pulmonology, Pendik Training and Research Hospital, Marmara University, Istanbul, Turkey
- 21Dept of Pediatric Pulmonology, Emma Children's Hospital, Amsterdam UMC, Location VUmc, Amsterdam, the Netherlands
- 22Danish Primary Ciliary Dyskinesia Centre, Paediatric Pulmonary Service, Dept of Paediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
- 23Dept 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
- 26Dept of Paediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, Prague, Czech Republic
- 27PCD Diagnosis and Research, Dept of Respiratory Sciences, University of Leicester, Leicester, UK
- 28Primary Ciliary Dyskinesia Management Centre, Leeds Teaching Hospitals NHS Trust, Leeds, UK
- 29Pneumology Dept, Hospital Universitari Vall d'Hebron, Vall d'Hebron Institut de Recerca (VHIR), Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain
- 30Dept of Respiratory Medicine, University Hospitals of Leicester, Leicester, UK
- 31Dept of Respiratory Medicine, Hannover Medical School (MHH) and DZL, Hannover, Germany
- 32Dept of Pediatric Pulmonology, Hospital Universitari Vall d'Hebron, VHIR, Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain
- 33Kartagener Syndrom and Primäre Ciliäre Dyskinesie e. V., Hannover, Germany
- 34Pediatric Pulmonology Dept, Reference Center for Rare Lung Diseases (RespiRare), Armand Trousseau Hospital, 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
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Vol 8 Issue 3
Table of Contents
The disease-specific clinical trial network for primary ciliary dyskinesia: PCD-CTN
