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Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials
- Source :
- Scientia, Recercat. Dipósit de la Recerca de Catalunya, instname, Lucas, Jane S; Gahleitner, Florian; Amorim, Adelina; Boon, Mieke; Brown, Philippa; Constant, Carolina; Cook, Simon; Crowley, Suzanne; Destouches, Damien M S; Eber, Ernst; Mussaffi, Huda; Haarman, Eric; Harris, Amanda; Koerner-Rettberg, Cordula; Kuehni, Claudia E.; Latzin, Philipp; Loebinger, Michael R; Lorent, Natalie; Maitre, Bernard; Moreno-Galdó, Antonio; ... (2019). Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials. ERJ Open Research, 5(1), 00147-2018. European Respiratory Society 10.1183/23120541.00147-2018
- Publication Year :
- 2019
-
Abstract
- Pulmonary exacerbations are a cause of significant morbidity in patients with primary ciliary dyskinesia (PCD) and are frequently used as an outcome measure in clinical research into chronic lung diseases. So far, there has been no consensus on the definition of pulmonary exacerbations in PCD. 30 multidisciplinary experts and patients developed a consensus definition for children and adults with PCD. Following a systematic review, the panel used a modified Delphi process with a combination of face-to-face meetings and e-surveys to develop a definition that can be used in research settings for children and adults with PCD. A pulmonary exacerbation was defined by the presence of three or more of the following seven items: 1) increased cough, 2) change in sputum volume and/or colour, 3) increased shortness of breath perceived by the patient or parent, 4) decision to start or change antibiotic treatment because of perceived pulmonary symptoms, 5) malaise, tiredness, fatigue or lethargy, 6) new or increased haemoptysis, and 7) temperature >38°C. The consensus panel proposed that the definition should be used for future clinical trials. The definition should be validated and the usability assessed during these studies.<br />A consensus definition for pulmonary exacerbations in children and adults with PCD for use in clinical trials http://ow.ly/Rcfr30n4Gn4
- Subjects :
- Pulmonary and Respiratory Medicine
medicine.medical_specialty
Sistema Respiratorio::Pulmón [ANATOMÍA]
Other subheadings::Other subheadings::/physiopathology [Other subheadings]
Otros calificadores::Otros calificadores::/fisiopatología [Otros calificadores]
Primary Ciliary Dyskinesia
lcsh:Medicine
610 Medicine & health
Malaise
Lethargy
Enfermedades Respiratorias::Enfermedades Respiratorias::Trastornos de la Motilidad Ciliar::Enfermedades Respiratorias::Síndrome de Kartagener [ENFERMEDADES]
360 Social problems & social services
otorhinolaryngologic diseases
medicine
In patient
Intensive care medicine
Primary ciliary dyskinesia
Lung
business.industry
lcsh:R
Expert consensus
Original Articles
medicine.disease
Respiratory System::Lung [ANATOMY]
Clinical trial
Pulmons - Malalties
medicine.anatomical_structure
Clinical research
Respiratory Tract Diseases::Respiratory Tract Diseases::Ciliary Motility Disorders::Respiratory Tract Diseases::Kartagener Syndrome [DISEASES]
medicine.symptom
business
Subjects
Details
- Language :
- English
- ISSN :
- 20446055 and 23120541
- Database :
- OpenAIRE
- Journal :
- Scientia, Recercat. Dipósit de la Recerca de Catalunya, instname, Lucas, Jane S; Gahleitner, Florian; Amorim, Adelina; Boon, Mieke; Brown, Philippa; Constant, Carolina; Cook, Simon; Crowley, Suzanne; Destouches, Damien M S; Eber, Ernst; Mussaffi, Huda; Haarman, Eric; Harris, Amanda; Koerner-Rettberg, Cordula; Kuehni, Claudia E.; Latzin, Philipp; Loebinger, Michael R; Lorent, Natalie; Maitre, Bernard; Moreno-Galdó, Antonio; ... (2019). Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials. ERJ Open Research, 5(1), 00147-2018. European Respiratory Society 10.1183/23120541.00147-2018 <http://dx.doi.org/10.1183/23120541.00147-2018>, Dipòsit Digital de Documents de la UAB, Universitat Autònoma de Barcelona, ERJ Open Research, 5(1):00147-2018. BMJ Publishing Group, Lucas, J S, Gahleitner, F, Amorim, A, Boon, M, Brown, P, Constant, C, Cook, S, Crowley, S, Destouches, D M S, Eber, E, Mussaffi, H, Haarman, E, Harris, A, Koerner-Rettberg, C, Kuehni, C E, Latzin, P, Loebinger, M R, Lorent, N, Maitre, B, Moreno-Galdó, A, Nielsen, K G, Özçelik, U, Philipsen, L K D, Pohunek, P, Polverino, E, Rademacher, J, Robinson, P, Snijders, D, Yiallouros, P & Carr, S B 2019, ' Pulmonary exacerbations in patients with primary ciliary dyskinesia : an expert consensus definition for use in clinical trials ', BMJ Open, vol. 5, no. 1, 00147-2018 . https://doi.org/10.1183/23120541.00147-2018, BMJ Open, 5(1):00147-2018. BMJ Publishing Group, ERJ Open Research, ERJ Open Research, Vol 5, Iss 1 (2019), Recercat: Dipósit de la Recerca de Catalunya, Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya), Lucas, J S, Gahleitner, F, Amorim, A, Boon, M, Brown, P, Constant, C, Cook, S, Crowley, S, Destouches, D M S, Eber, E, Mussaffi, H, Haarman, E, Harris, A, Koerner-Rettberg, C, Kuehni, C E, Latzin, P, Loebinger, M R, Lorent, N, Maitre, B, Moreno-Galdó, A, Nielsen, K G, Özçelik, U, Philipsen, L K D, Pohunek, P, Polverino, E, Rademacher, J, Robinson, P, Snijders, D, Yiallouros, P & Carr, S B 2019, ' Pulmonary exacerbations in patients with primary ciliary dyskinesia : an expert consensus definition for use in clinical trials ', ERJ Open Research, vol. 5, no. 1, 00147-2018 . https://doi.org/10.1183/23120541.00147-2018
- Accession number :
- edsair.doi.dedup.....549edaf0bb6af2da0005d52217f974f0