Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials
| Autor(a) principal: | |
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| Data de Publicação: | 2019 |
| Outros Autores: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
| Tipo de documento: | Artigo |
| Idioma: | eng |
| Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
| Texto Completo: | http://hdl.handle.net/10451/54054 |
Resumo: | Copyright ©ERS 2019. This article is open access and distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0 |
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Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trialsCopyright ©ERS 2019. This article is open access and distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0Pulmonary 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.Repositório da Universidade de LisboaLucas, Jane S.Gahleitner, FlorianAmorim, AdelinaBoon, MiekeBrown, PhilippaConstant, CarolinaCook, SimonCrowley, SuzanneDestouches, Damien M.S.Eber, ErnstMussaffi, HudaHaarman, EricHarris, AmandaKoerner-Rettberg, CordulaKuehni, Claudia E.Latzin, PhilippLoebinger, Michael R.Lorent, NatalieMaitre, BernardMoreno-Galdó, AntonioNielsen, Kim G.Özçelik, UğurPhilipsen, Lue Katrine DrasbækPohunek, PetrPolverino, EvaRademacher, JessicaRobinson, PhilSnijders, DeborahYiallouros, PanayiotisCarr, Siobhán B.2022-08-03T16:47:21Z20192019-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10451/54054engERJ Open Res. 2019 Feb 1;5(1):00147-201810.1183/23120541.00147-20182312-0541info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-07-14T15:40:27ZPortal AgregadorONG |
| dc.title.none.fl_str_mv |
Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials |
| title |
Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials |
| spellingShingle |
Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials Lucas, Jane S. |
| title_short |
Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials |
| title_full |
Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials |
| title_fullStr |
Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials |
| title_full_unstemmed |
Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials |
| title_sort |
Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials |
| author |
Lucas, Jane S. |
| author_facet |
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 Nielsen, Kim G. Özçelik, Uğur Philipsen, Lue Katrine Drasbæk Pohunek, Petr Polverino, Eva Rademacher, Jessica Robinson, Phil Snijders, Deborah Yiallouros, Panayiotis Carr, Siobhán B. |
| author_role |
author |
| author2 |
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 Nielsen, Kim G. Özçelik, Uğur Philipsen, Lue Katrine Drasbæk Pohunek, Petr Polverino, Eva Rademacher, Jessica Robinson, Phil Snijders, Deborah Yiallouros, Panayiotis Carr, Siobhán B. |
| author2_role |
author author author author author author author author author author author author author author author author author author author author author author author author author author author author author |
| dc.contributor.none.fl_str_mv |
Repositório da Universidade de Lisboa |
| dc.contributor.author.fl_str_mv |
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 Nielsen, Kim G. Özçelik, Uğur Philipsen, Lue Katrine Drasbæk Pohunek, Petr Polverino, Eva Rademacher, Jessica Robinson, Phil Snijders, Deborah Yiallouros, Panayiotis Carr, Siobhán B. |
| description |
Copyright ©ERS 2019. This article is open access and distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0 |
| publishDate |
2019 |
| dc.date.none.fl_str_mv |
2019 2019-01-01T00:00:00Z 2022-08-03T16:47:21Z |
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info:eu-repo/semantics/publishedVersion |
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info:eu-repo/semantics/article |
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article |
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publishedVersion |
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http://hdl.handle.net/10451/54054 |
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http://hdl.handle.net/10451/54054 |
| dc.language.iso.fl_str_mv |
eng |
| language |
eng |
| dc.relation.none.fl_str_mv |
ERJ Open Res. 2019 Feb 1;5(1):00147-2018 10.1183/23120541.00147-2018 2312-0541 |
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info:eu-repo/semantics/openAccess |
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openAccess |
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application/pdf |
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RCAAP |
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RCAAP |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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