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The disease-specific clinical trial network for primary ciliary dyskinesia: PCD-CTN

Johanna Raidt, Bernard Maitre, Petra Pennekamp, Josje Altenburg, Pinelopi Anagnostopoulou, Miguel Armengot, Lizan D. Bloemsma, Mieke Boon, Melissa Borrelli, Folke Brinkmann, Siobhan B. Carr, Mary P. Carroll, Silvia Castillo-Corullón, André Coste, Renato Cutrera, Eleonora Dehlink, Damien M.S. Destouches, Maria E. Di Cicco, Lucy Dixon, Nagehan Emiralioglu, Ela Erdem Eralp, Eric G. Haarman, Claire Hogg, Bulent Karadag, Helene E. Kobbernagel, Natalie Lorent, Marcus A. Mall, June K. Marthin, Vendula Martinu, Manjith Narayanan, Ugur Ozcelik, Daniel Peckham, Massimo Pifferi, Petr Pohunek, Eva Polverino, Simon Range, Felix C. Ringshausen, Evie Robson, Jobst Roehmel, Sandra Rovira-Amigo, Francesca Santamaria, Anne Schlegtendal, Zsolt Szépfalusi, Petra Tempels, Guillaume Thouvenin, Nicola Ullmann, Woolf T. Walker, Martin Wetzke, Panayiotis Yiallouros, Heymut Omran, Kim G. Nielsen
ERJ Open Research 2022 8: 00139-2022; DOI: 10.1183/23120541.00139-2022
Johanna Raidt
1Dept of General Pediatrics, University Hospital Muenster, Muenster, Germany
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Bernard Maitre
2Service de Pneumologie, Hôpital Henri Mondor et Centre Hospitalier Intercommunal de Créteil, Assistance Publique-Hôpitaux de Paris (AP-HP), Créteil, France
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Petra Pennekamp
1Dept of General Pediatrics, University Hospital Muenster, Muenster, Germany
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Josje Altenburg
3Dept of Pulmonology, Amsterdam UMC, Location AMC, Amsterdam, the Netherlands
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Pinelopi Anagnostopoulou
4Medical School, University of Cyprus, Nicosia, Cyprus
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Miguel Armengot
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
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Lizan D. Bloemsma
6Dept of Respiratory Medicine, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands
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Mieke Boon
7Dept of Pediatrics, University Hospital Leuven, Leuven, Belgium
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Melissa Borrelli
8Pediatric Pulmonology, Dept of Translational Medical Sciences, Federico II University, Azienda Ospedaliera Universitaria Federico II, Naples, Italy
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Folke Brinkmann
9Dept of Paediatric Pulmonology, University Children's Hospital of Ruhr University Bochum at St Josef-Hospital, Bochum, Germany
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Siobhan B. Carr
10PCD Centre and Dept of Paediatric Respiratory Medicine, Royal Brompton Hospital and NHLI, Imperial College, London, UK
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  • ORCID record for Siobhan B. Carr
Mary P. Carroll
11Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK
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Silvia Castillo-Corullón
12Paediatric Pulmonology Unit, Hospital Clínico Universitario Valencia, Valencia, Spain
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  • ORCID record for Silvia Castillo-Corullón
André Coste
13Service d'ORL, Hôpital Henri Mondor et Centre Hospitalier Intercommunal de Créteil, AP-HP, Créteil, France
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Renato Cutrera
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
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Eleonora Dehlink
15Division of Pediatric Pulmonology, Allergology, and Endocrinology, Dept of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
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Damien M.S. Destouches
16Association des Patients Ayant une Dyskinésie Ciliaire Primitive (ADCP), Saint Etienne, France
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Maria E. Di Cicco
17Pulmonology and Allergology Section, Unit of Pediatrics, Pisa University Hospital, Pisa, Italy
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Lucy Dixon
18PCD Support UK, Buckingham, UK
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Nagehan Emiralioglu
19Dept of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, Turkey
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Ela Erdem Eralp
20Division of Pediatric Pulmonology, Pendik Training and Research Hospital, Marmara University, Istanbul, Turkey
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Eric G. Haarman
21Dept of Pediatric Pulmonology, Emma Children's Hospital, Amsterdam UMC, Location VUmc, Amsterdam, the Netherlands
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Claire Hogg
10PCD Centre and Dept of Paediatric Respiratory Medicine, Royal Brompton Hospital and NHLI, Imperial College, London, UK
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Bulent Karadag
20Division of Pediatric Pulmonology, Pendik Training and Research Hospital, Marmara University, Istanbul, Turkey
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Helene E. Kobbernagel
22Danish Primary Ciliary Dyskinesia Centre, Paediatric Pulmonary Service, Dept of Paediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
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Natalie Lorent
7Dept of Pediatrics, University Hospital Leuven, Leuven, Belgium
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Marcus A. Mall
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
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June K. Marthin
22Danish Primary Ciliary Dyskinesia Centre, Paediatric Pulmonary Service, Dept of Paediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
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Vendula Martinu
26Dept of Paediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, Prague, Czech Republic
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Manjith Narayanan
27PCD Diagnosis and Research, Dept of Respiratory Sciences, University of Leicester, Leicester, UK
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Ugur Ozcelik
19Dept of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, Turkey
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Daniel Peckham
28Primary Ciliary Dyskinesia Management Centre, Leeds Teaching Hospitals NHS Trust, Leeds, UK
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Massimo Pifferi
17Pulmonology and Allergology Section, Unit of Pediatrics, Pisa University Hospital, Pisa, Italy
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Petr Pohunek
26Dept of Paediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, Prague, Czech Republic
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Eva Polverino
29Pneumology Dept, Hospital Universitari Vall d'Hebron, Vall d'Hebron Institut de Recerca (VHIR), Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain
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Simon Range
30Dept of Respiratory Medicine, University Hospitals of Leicester, Leicester, UK
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Felix C. Ringshausen
31Dept of Respiratory Medicine, Hannover Medical School (MHH) and DZL, Hannover, Germany
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Evie Robson
28Primary Ciliary Dyskinesia Management Centre, Leeds Teaching Hospitals NHS Trust, Leeds, UK
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Jobst Roehmel
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
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Sandra Rovira-Amigo
32Dept of Pediatric Pulmonology, Hospital Universitari Vall d'Hebron, VHIR, Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain
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Francesca Santamaria
28Primary Ciliary Dyskinesia Management Centre, Leeds Teaching Hospitals NHS Trust, Leeds, UK
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Anne Schlegtendal
9Dept of Paediatric Pulmonology, University Children's Hospital of Ruhr University Bochum at St Josef-Hospital, Bochum, Germany
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Zsolt Szépfalusi
15Division of Pediatric Pulmonology, Allergology, and Endocrinology, Dept of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
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Petra Tempels
33Kartagener Syndrom and Primäre Ciliäre Dyskinesie e. V., Hannover, Germany
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Guillaume Thouvenin
34Pediatric Pulmonology Dept, Reference Center for Rare Lung Diseases (RespiRare), Armand Trousseau Hospital, AP-HP, Paris, France
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Nicola Ullmann
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
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Woolf T. Walker
11Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK
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Martin Wetzke
31Dept of Respiratory Medicine, Hannover Medical School (MHH) and DZL, Hannover, Germany
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Panayiotis Yiallouros
4Medical School, University of Cyprus, Nicosia, Cyprus
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Heymut Omran
1Dept of General Pediatrics, University Hospital Muenster, Muenster, Germany
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Kim G. Nielsen
22Danish Primary Ciliary Dyskinesia Centre, Paediatric Pulmonary Service, Dept of Paediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
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  • For correspondence: kim.g.nielsen@regionh.dk
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Article Information

vol. 8 no. 3
DOI 
https://doi.org/10.1183/23120541.00139-2022

Published By 
European Respiratory Society
Online ISSN 
2312-0541
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

  1. Johanna Raidt1,
  2. Bernard Maitre2,
  3. Petra Pennekamp1,
  4. Josje Altenburg3,
  5. Pinelopi Anagnostopoulou4,
  6. Miguel Armengot5,
  7. Lizan D. Bloemsma6,
  8. Mieke Boon7,
  9. Melissa Borrelli8,
  10. Folke Brinkmann9,
  11. Siobhan B. Carr10,
  12. Mary P. Carroll11,
  13. Silvia Castillo-Corullón12,
  14. André Coste13,
  15. Renato Cutrera14,
  16. Eleonora Dehlink15,
  17. Damien M.S. Destouches16,
  18. Maria E. Di Cicco17,
  19. Lucy Dixon18,
  20. Nagehan Emiralioglu19,
  21. Ela Erdem Eralp20,
  22. Eric G. Haarman21,
  23. Claire Hogg10,
  24. Bulent Karadag20,
  25. Helene E. Kobbernagel22,
  26. Natalie Lorent7,
  27. Marcus A. Mall23,24,25,
  28. June K. Marthin22,
  29. Vendula Martinu26,
  30. Manjith Narayanan27,
  31. Ugur Ozcelik19,
  32. Daniel Peckham28,
  33. Massimo Pifferi17,
  34. Petr Pohunek26,
  35. Eva Polverino29,
  36. Simon Range30,
  37. Felix C. Ringshausen31,
  38. Evie Robson28,
  39. Jobst Roehmel23,
  40. Sandra Rovira-Amigo32,
  41. Francesca Santamaria28,
  42. Anne Schlegtendal9,
  43. Zsolt Szépfalusi15,
  44. Petra Tempels33,
  45. Guillaume Thouvenin34,
  46. Nicola Ullmann14,
  47. Woolf T. Walker11,
  48. Martin Wetzke31,
  49. Panayiotis Yiallouros4,
  50. Heymut Omran1 and
  51. Kim G. Nielsen22⇑
  1. 1Dept of General Pediatrics, University Hospital Muenster, Muenster, Germany
  2. 2Service de Pneumologie, Hôpital Henri Mondor et Centre Hospitalier Intercommunal de Créteil, Assistance Publique-Hôpitaux de Paris (AP-HP), Créteil, France
  3. 3Dept of Pulmonology, Amsterdam UMC, Location AMC, Amsterdam, the Netherlands
  4. 4Medical School, University of Cyprus, Nicosia, Cyprus
  5. 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
  6. 6Dept of Respiratory Medicine, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands
  7. 7Dept of Pediatrics, University Hospital Leuven, Leuven, Belgium
  8. 8Pediatric Pulmonology, Dept of Translational Medical Sciences, Federico II University, Azienda Ospedaliera Universitaria Federico II, Naples, Italy
  9. 9Dept of Paediatric Pulmonology, University Children's Hospital of Ruhr University Bochum at St Josef-Hospital, Bochum, Germany
  10. 10PCD Centre and Dept of Paediatric Respiratory Medicine, Royal Brompton Hospital and NHLI, Imperial College, London, UK
  11. 11Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  12. 12Paediatric Pulmonology Unit, Hospital Clínico Universitario Valencia, Valencia, Spain
  13. 13Service d'ORL, Hôpital Henri Mondor et Centre Hospitalier Intercommunal de Créteil, AP-HP, Créteil, France
  14. 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
  15. 15Division of Pediatric Pulmonology, Allergology, and Endocrinology, Dept of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria
  16. 16Association des Patients Ayant une Dyskinésie Ciliaire Primitive (ADCP), Saint Etienne, France
  17. 17Pulmonology and Allergology Section, Unit of Pediatrics, Pisa University Hospital, Pisa, Italy
  18. 18PCD Support UK, Buckingham, UK
  19. 19Dept of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, Turkey
  20. 20Division of Pediatric Pulmonology, Pendik Training and Research Hospital, Marmara University, Istanbul, Turkey
  21. 21Dept of Pediatric Pulmonology, Emma Children's Hospital, Amsterdam UMC, Location VUmc, Amsterdam, the Netherlands
  22. 22Danish Primary Ciliary Dyskinesia Centre, Paediatric Pulmonary Service, Dept of Paediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark
  23. 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
  24. 24Berlin Institute of Health (BIH) at the Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin, Germany
  25. 25German Center for Lung Research (DZL) (Associated Partner), Berlin, Germany
  26. 26Dept of Paediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, Prague, Czech Republic
  27. 27PCD Diagnosis and Research, Dept of Respiratory Sciences, University of Leicester, Leicester, UK
  28. 28Primary Ciliary Dyskinesia Management Centre, Leeds Teaching Hospitals NHS Trust, Leeds, UK
  29. 29Pneumology Dept, Hospital Universitari Vall d'Hebron, Vall d'Hebron Institut de Recerca (VHIR), Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain
  30. 30Dept of Respiratory Medicine, University Hospitals of Leicester, Leicester, UK
  31. 31Dept of Respiratory Medicine, Hannover Medical School (MHH) and DZL, Hannover, Germany
  32. 32Dept of Pediatric Pulmonology, Hospital Universitari Vall d'Hebron, VHIR, Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain
  33. 33Kartagener Syndrom and Primäre Ciliäre Dyskinesie e. V., Hannover, Germany
  34. 34Pediatric Pulmonology Dept, Reference Center for Rare Lung Diseases (RespiRare), Armand Trousseau Hospital, AP-HP, Paris, France
  1. Corresponding author: Kim Nielsen (kim.g.nielsen{at}regionh.dk)
View Full Text

Funding

  • Instituto de Salud Carlos III

    FIS PI19/00949
  • Registry Warehouse

    Horizon2020 GA 777295
  • Deutsche Forschungsgemeinschaft

    OM6/7, OM6/8, OM6/10, OM6/14; CRU 326 subprojects
  • Interdisziplinaeres Zentrum für Klinische Forschung Muenster

    Om2/009/12, Om2/015/16, Om2/010/20
  • Danish “Children´s Lung Foundation” (Børnelungefonden)

  • Charles University Grant Agency

    670119P
  • BESTCILIA

    EU FP7 GA 305404
  • Bundesministerium für Bildung und Forschung

    82DZL009B1
  • RadiCONetwork (Inserm, France)

  • Ministry of Health of the Czech Republic

    NV19-07-00210

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The disease-specific clinical trial network for primary ciliary dyskinesia: PCD-CTN
Johanna Raidt, Bernard Maitre, Petra Pennekamp, Josje Altenburg, Pinelopi Anagnostopoulou, Miguel Armengot, Lizan D. Bloemsma, Mieke Boon, Melissa Borrelli, Folke Brinkmann, Siobhan B. Carr, Mary P. Carroll, Silvia Castillo-Corullón, André Coste, Renato Cutrera, Eleonora Dehlink, Damien M.S. Destouches, Maria E. Di Cicco, Lucy Dixon, Nagehan Emiralioglu, Ela Erdem Eralp, Eric G. Haarman, Claire Hogg, Bulent Karadag, Helene E. Kobbernagel, Natalie Lorent, Marcus A. Mall, June K. Marthin, Vendula Martinu, Manjith Narayanan, Ugur Ozcelik, Daniel Peckham, Massimo Pifferi, Petr Pohunek, Eva Polverino, Simon Range, Felix C. Ringshausen, Evie Robson, Jobst Roehmel, Sandra Rovira-Amigo, Francesca Santamaria, Anne Schlegtendal, Zsolt Szépfalusi, Petra Tempels, Guillaume Thouvenin, Nicola Ullmann, Woolf T. Walker, Martin Wetzke, Panayiotis Yiallouros, Heymut Omran, Kim G. Nielsen
ERJ Open Research Jul 2022, 8 (3) 00139-2022; DOI: 10.1183/23120541.00139-2022

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The disease-specific clinical trial network for primary ciliary dyskinesia: PCD-CTN
Johanna Raidt, Bernard Maitre, Petra Pennekamp, Josje Altenburg, Pinelopi Anagnostopoulou, Miguel Armengot, Lizan D. Bloemsma, Mieke Boon, Melissa Borrelli, Folke Brinkmann, Siobhan B. Carr, Mary P. Carroll, Silvia Castillo-Corullón, André Coste, Renato Cutrera, Eleonora Dehlink, Damien M.S. Destouches, Maria E. Di Cicco, Lucy Dixon, Nagehan Emiralioglu, Ela Erdem Eralp, Eric G. Haarman, Claire Hogg, Bulent Karadag, Helene E. Kobbernagel, Natalie Lorent, Marcus A. Mall, June K. Marthin, Vendula Martinu, Manjith Narayanan, Ugur Ozcelik, Daniel Peckham, Massimo Pifferi, Petr Pohunek, Eva Polverino, Simon Range, Felix C. Ringshausen, Evie Robson, Jobst Roehmel, Sandra Rovira-Amigo, Francesca Santamaria, Anne Schlegtendal, Zsolt Szépfalusi, Petra Tempels, Guillaume Thouvenin, Nicola Ullmann, Woolf T. Walker, Martin Wetzke, Panayiotis Yiallouros, Heymut Omran, Kim G. Nielsen
ERJ Open Research Jul 2022, 8 (3) 00139-2022; DOI: 10.1183/23120541.00139-2022
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  • Article
    • Abstract
    • Abstract
    • Introduction
    • Clinical trial networks
    • ERN-LUNG PCD Core Network
    • ERN-LUNG International PCD Registry
    • Establishment of the PCD-CTN
    • Structure of the PCD-CTN
    • Evaluation of the PCD-CTN – performance metrics
    • The strengths of the PCD-CTN
    • Conclusion
    • Acknowledgements
    • Footnotes
    • References
  • Figures & Data
  • Info & Metrics
  • PDF

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