The disease-specific clinical trial network for primary ciliary dyskinesia: PCD-CTN
Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by impaired mucociliary clearance leading to irreversible lung damage. In contrast to other rare lung diseases like cystic fibrosis (CF), there are only few clinical trials and limited evidence-based treatments. Management is...
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| Format: | Article |
| Language: | English |
| Published: |
European Respiratory Society
2022-08-01
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| Series: | ERJ Open Research |
| Online Access: | http://openres.ersjournals.com/content/8/3/00139-2022.full |
| _version_ | 1797809435617263616 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Johanna Raidt |
| collection | DOAJ |
| description | Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by impaired mucociliary clearance leading to irreversible lung damage. In contrast to other rare lung diseases like cystic fibrosis (CF), there are only few clinical trials and limited evidence-based treatments. Management is mainly based on expert opinions and treatment is challenging due to a wide range of clinical manifestations and disease severity. To improve clinical and translational research and facilitate development of new treatments, the clinical trial network for PCD (PCD-CTN) was founded in 2020 under the framework of the European Reference Network (ERN)-LUNG PCD Core. Applications from European PCD sites interested in participating in the PCD-CTN were requested. Inclusion criteria consisted of patient numbers, membership of ERN-LUNG PCD Core, use of associated standards of care, experience in PCD and/or CF clinical research, resources to run clinical trials, good clinical practice (GCP) certifications and institutional support. So far, applications from 22 trial sites in 18 European countries have been approved, including >1400 adult and >1600 paediatric individuals with PCD. The PCD-CTN is headed by a coordinating centre and consists of a steering and executive committee, a data safety monitoring board and committees for protocol review, training and standardisation. A strong association with patient organisations and industrial companies are further cornerstones. All participating trial sites agreed on a code of conduct. As CTNs from other diseases have demonstrated successfully, this newly formed PCD-CTN operates to establish evidence-based treatments for this orphan disease and to bring new personalised treatment approaches to patients. |
| first_indexed | 2024-03-13T06:52:44Z |
| format | Article |
| id | doaj.art-71c85d757d254e3f8fc3ac7e15aee183 |
| institution | Directory Open Access Journal |
| issn | 2312-0541 |
| language | English |
| last_indexed | 2024-03-13T06:52:44Z |
| publishDate | 2022-08-01 |
| publisher | European Respiratory Society |
| record_format | Article |
| series | ERJ Open Research |
| spelling | doaj.art-71c85d757d254e3f8fc3ac7e15aee1832023-06-07T13:30:19ZengEuropean Respiratory SocietyERJ Open Research2312-05412022-08-018310.1183/23120541.00139-202200139-2022The disease-specific clinical trial network for primary ciliary dyskinesia: PCD-CTNJohanna Raidt0Bernard Maitre1Petra Pennekamp2Josje Altenburg3Pinelopi Anagnostopoulou4Miguel Armengot5Lizan D. Bloemsma6Mieke Boon7Melissa Borrelli8Folke Brinkmann9Siobhan B. Carr10Mary P. Carroll11Silvia Castillo-Corullón12André Coste13Renato Cutrera14Eleonora Dehlink15Damien M.S. Destouches16Maria E. Di Cicco17Lucy Dixon18Nagehan Emiralioglu19Ela Erdem Eralp20Eric G. Haarman21Claire Hogg22Bulent Karadag23Helene E. Kobbernagel24Natalie Lorent25Marcus A. Mall26June K. Marthin27Vendula Martinu28Manjith Narayanan29Ugur Ozcelik30Daniel Peckham31Massimo Pifferi32Petr Pohunek33Eva Polverino34Simon Range35Felix C. Ringshausen36Evie Robson37Jobst Roehmel38Sandra Rovira-Amigo39Francesca Santamaria40Anne Schlegtendal41Zsolt Szépfalusi42Petra Tempels43Guillaume Thouvenin44Nicola Ullmann45Woolf T. Walker46Martin Wetzke47Panayiotis Yiallouros48Heymut Omran49Kim G. Nielsen50 Dept of General Pediatrics, University Hospital Muenster, Muenster, Germany Service de Pneumologie, Hôpital Henri Mondor et Centre Hospitalier Intercommunal de Créteil, Assistance Publique-Hôpitaux de Paris (AP-HP), Créteil, France Dept of General Pediatrics, University Hospital Muenster, Muenster, Germany Dept of Pulmonology, Amsterdam UMC, Location AMC, Amsterdam, the Netherlands Medical School, University of Cyprus, Nicosia, Cyprus ENT 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 Dept of Respiratory Medicine, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands Dept of Pediatrics, University Hospital Leuven, Leuven, Belgium Pediatric Pulmonology, Dept of Translational Medical Sciences, Federico II University, Azienda Ospedaliera Universitaria Federico II, Naples, Italy Dept of Paediatric Pulmonology, University Children's Hospital of Ruhr University Bochum at St Josef-Hospital, Bochum, Germany PCD Centre and Dept of Paediatric Respiratory Medicine, Royal Brompton Hospital and NHLI, Imperial College, London, UK Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK Paediatric Pulmonology Unit, Hospital Clínico Universitario Valencia, Valencia, Spain Service d'ORL, Hôpital Henri Mondor et Centre Hospitalier Intercommunal de Créteil, AP-HP, Créteil, France Pediatric 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 Division of Pediatric Pulmonology, Allergology, and Endocrinology, Dept of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria Association des Patients Ayant une Dyskinésie Ciliaire Primitive (ADCP), Saint Etienne, France Pulmonology and Allergology Section, Unit of Pediatrics, Pisa University Hospital, Pisa, Italy PCD Support UK, Buckingham, UK Dept of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, Turkey Division of Pediatric Pulmonology, Pendik Training and Research Hospital, Marmara University, Istanbul, Turkey Dept of Pediatric Pulmonology, Emma Children's Hospital, Amsterdam UMC, Location VUmc, Amsterdam, the Netherlands PCD Centre and Dept of Paediatric Respiratory Medicine, Royal Brompton Hospital and NHLI, Imperial College, London, UK Division of Pediatric Pulmonology, Pendik Training and Research Hospital, Marmara University, Istanbul, Turkey Danish Primary Ciliary Dyskinesia Centre, Paediatric Pulmonary Service, Dept of Paediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark Dept of Pediatrics, University Hospital Leuven, Leuven, Belgium Dept 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 Danish Primary Ciliary Dyskinesia Centre, Paediatric Pulmonary Service, Dept of Paediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark Dept of Paediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, Prague, Czech Republic PCD Diagnosis and Research, Dept of Respiratory Sciences, University of Leicester, Leicester, UK Dept of Pediatric Pulmonology, Hacettepe University Faculty of Medicine, Ankara, Turkey Primary Ciliary Dyskinesia Management Centre, Leeds Teaching Hospitals NHS Trust, Leeds, UK Pulmonology and Allergology Section, Unit of Pediatrics, Pisa University Hospital, Pisa, Italy Dept of Paediatrics, Second Faculty of Medicine, Charles University and Motol University Hospital, Prague, Czech Republic Pneumology Dept, Hospital Universitari Vall d'Hebron, Vall d'Hebron Institut de Recerca (VHIR), Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain Dept of Respiratory Medicine, University Hospitals of Leicester, Leicester, UK Dept of Respiratory Medicine, Hannover Medical School (MHH) and DZL, Hannover, Germany Primary Ciliary Dyskinesia Management Centre, Leeds Teaching Hospitals NHS Trust, Leeds, UK Dept 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 Dept of Pediatric Pulmonology, Hospital Universitari Vall d'Hebron, VHIR, Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain Primary Ciliary Dyskinesia Management Centre, Leeds Teaching Hospitals NHS Trust, Leeds, UK Dept of Paediatric Pulmonology, University Children's Hospital of Ruhr University Bochum at St Josef-Hospital, Bochum, Germany Division of Pediatric Pulmonology, Allergology, and Endocrinology, Dept of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria Kartagener Syndrom and Primäre Ciliäre Dyskinesie e. V., Hannover, Germany Pediatric Pulmonology Dept, Reference Center for Rare Lung Diseases (RespiRare), Armand Trousseau Hospital, AP-HP, Paris, France Pediatric 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 Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK Dept of Respiratory Medicine, Hannover Medical School (MHH) and DZL, Hannover, Germany Medical School, University of Cyprus, Nicosia, Cyprus Dept of General Pediatrics, University Hospital Muenster, Muenster, Germany Danish Primary Ciliary Dyskinesia Centre, Paediatric Pulmonary Service, Dept of Paediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by impaired mucociliary clearance leading to irreversible lung damage. In contrast to other rare lung diseases like cystic fibrosis (CF), there are only few clinical trials and limited evidence-based treatments. Management is mainly based on expert opinions and treatment is challenging due to a wide range of clinical manifestations and disease severity. To improve clinical and translational research and facilitate development of new treatments, the clinical trial network for PCD (PCD-CTN) was founded in 2020 under the framework of the European Reference Network (ERN)-LUNG PCD Core. Applications from European PCD sites interested in participating in the PCD-CTN were requested. Inclusion criteria consisted of patient numbers, membership of ERN-LUNG PCD Core, use of associated standards of care, experience in PCD and/or CF clinical research, resources to run clinical trials, good clinical practice (GCP) certifications and institutional support. So far, applications from 22 trial sites in 18 European countries have been approved, including >1400 adult and >1600 paediatric individuals with PCD. The PCD-CTN is headed by a coordinating centre and consists of a steering and executive committee, a data safety monitoring board and committees for protocol review, training and standardisation. A strong association with patient organisations and industrial companies are further cornerstones. All participating trial sites agreed on a code of conduct. As CTNs from other diseases have demonstrated successfully, this newly formed PCD-CTN operates to establish evidence-based treatments for this orphan disease and to bring new personalised treatment approaches to patients.http://openres.ersjournals.com/content/8/3/00139-2022.full |
| spellingShingle | 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 The disease-specific clinical trial network for primary ciliary dyskinesia: PCD-CTN ERJ Open Research |
| title | The disease-specific clinical trial network for primary ciliary dyskinesia: PCD-CTN |
| title_full | The disease-specific clinical trial network for primary ciliary dyskinesia: PCD-CTN |
| title_fullStr | The disease-specific clinical trial network for primary ciliary dyskinesia: PCD-CTN |
| title_full_unstemmed | The disease-specific clinical trial network for primary ciliary dyskinesia: PCD-CTN |
| title_short | The disease-specific clinical trial network for primary ciliary dyskinesia: PCD-CTN |
| title_sort | disease specific clinical trial network for primary ciliary dyskinesia pcd ctn |
| url | http://openres.ersjournals.com/content/8/3/00139-2022.full |
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