Idiopathic pulmonary fibrosis in a Swiss interstitial lung disease reference centre

BACKGROUND Idiopathic pulmonary fibrosis (IPF) differs substantially from other idiopathic interstitial pneumonias regarding disease trajectory and the appropriate management strategies, making meticulous diagnosis essential. However, patient characteristics and clinical practice vary between clini...
Ausführliche Beschreibung

Gespeichert in:

Autor*in:	Sabina A. Guler [verfasserIn] Pascal Zumstein [verfasserIn] Sabina Berezowska [verfasserIn] Alexander Poellinger [verfasserIn] Thomas Geiser [verfasserIn] Manuela Funke-Chambour [verfasserIn]

Format:	E-Artikel
Sprache:	Englisch

Erschienen:	2018

Schlagwörter:	idiopathic interstitial pneumonia idiopathic pulmonary fibrosis registry real life practice Cohort study

Übergeordnetes Werk:	In: Swiss Medical Weekly - SMW supporting association (Trägerverein Swiss Medical Weekly SMW), 2003, 148(2018), 0102
Übergeordnetes Werk:	volume:148 ; year:2018 ; number:0102

Links:	Link aufrufen Link aufrufen Link aufrufen Journal toc

DOI / URN:	10.4414/smw.2018.14577

Katalog-ID:	DOAJ085051187

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520			\|a BACKGROUND Idiopathic pulmonary fibrosis (IPF) differs substantially from other idiopathic interstitial pneumonias regarding disease trajectory and the appropriate management strategies, making meticulous diagnosis essential. However, patient characteristics and clinical practice vary between clinical trials, and real life and registries provide the opportunity to critically analyse current clinical practices in order to ultimately improve patient care. METHODS: We aimed to identify characteristics of our baseline IPF cohort at initiation of a web-based registry for patients with idiopathic interstitial pneumonia. Baseline and 6-month follow-up data from all consecutive IPF patients consulting at our centre over 2 years were analysed. RESULTS Forty IPF patients were included for baseline and 23 for longitudinal analysis. Besides many similarities to other IPF populations, our cohort included considerably fewer women. Forced vital capacity impairment in our cohort was more severe and mortality prediction poorer than in clinical trials, which emphasises the importance to confirm the applicability of clinical trial results with data from real life settings. CONCLUSION Registries for rare diseases such as IPF are a valuable resource for studying the course of the disease under current compliance with diagnostic and treatment guidelines and to appreciate local epidemiological particularities.
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spelling	10.4414/smw.2018.14577 doi (DE-627)DOAJ085051187 (DE-599)DOAJb6b16cad89aa4f72a2685d3c028d6666 DE-627 ger DE-627 rakwb eng Sabina A. Guler verfasserin aut Idiopathic pulmonary fibrosis in a Swiss interstitial lung disease reference centre 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier BACKGROUND Idiopathic pulmonary fibrosis (IPF) differs substantially from other idiopathic interstitial pneumonias regarding disease trajectory and the appropriate management strategies, making meticulous diagnosis essential. However, patient characteristics and clinical practice vary between clinical trials, and real life and registries provide the opportunity to critically analyse current clinical practices in order to ultimately improve patient care. METHODS: We aimed to identify characteristics of our baseline IPF cohort at initiation of a web-based registry for patients with idiopathic interstitial pneumonia. Baseline and 6-month follow-up data from all consecutive IPF patients consulting at our centre over 2 years were analysed. RESULTS Forty IPF patients were included for baseline and 23 for longitudinal analysis. Besides many similarities to other IPF populations, our cohort included considerably fewer women. Forced vital capacity impairment in our cohort was more severe and mortality prediction poorer than in clinical trials, which emphasises the importance to confirm the applicability of clinical trial results with data from real life settings. CONCLUSION Registries for rare diseases such as IPF are a valuable resource for studying the course of the disease under current compliance with diagnostic and treatment guidelines and to appreciate local epidemiological particularities. idiopathic interstitial pneumonia idiopathic pulmonary fibrosis registry real life practice Cohort study Medicine R Pascal Zumstein verfasserin aut Sabina Berezowska verfasserin aut Alexander Poellinger verfasserin aut Thomas Geiser verfasserin aut Manuela Funke-Chambour verfasserin aut In Swiss Medical Weekly SMW supporting association (Trägerverein Swiss Medical Weekly SMW), 2003 148(2018), 0102 (DE-627)324825811 (DE-600)2031164-3 14243997 nnns volume:148 year:2018 number:0102 https://doi.org/10.4414/smw.2018.14577 kostenfrei https://doaj.org/article/b6b16cad89aa4f72a2685d3c028d6666 kostenfrei https://www.smw.ch/index.php/smw/article/view/2427 kostenfrei https://doaj.org/toc/1424-3997 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 148 2018 0102
allfields_unstemmed	10.4414/smw.2018.14577 doi (DE-627)DOAJ085051187 (DE-599)DOAJb6b16cad89aa4f72a2685d3c028d6666 DE-627 ger DE-627 rakwb eng Sabina A. Guler verfasserin aut Idiopathic pulmonary fibrosis in a Swiss interstitial lung disease reference centre 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier BACKGROUND Idiopathic pulmonary fibrosis (IPF) differs substantially from other idiopathic interstitial pneumonias regarding disease trajectory and the appropriate management strategies, making meticulous diagnosis essential. However, patient characteristics and clinical practice vary between clinical trials, and real life and registries provide the opportunity to critically analyse current clinical practices in order to ultimately improve patient care. METHODS: We aimed to identify characteristics of our baseline IPF cohort at initiation of a web-based registry for patients with idiopathic interstitial pneumonia. Baseline and 6-month follow-up data from all consecutive IPF patients consulting at our centre over 2 years were analysed. RESULTS Forty IPF patients were included for baseline and 23 for longitudinal analysis. Besides many similarities to other IPF populations, our cohort included considerably fewer women. Forced vital capacity impairment in our cohort was more severe and mortality prediction poorer than in clinical trials, which emphasises the importance to confirm the applicability of clinical trial results with data from real life settings. CONCLUSION Registries for rare diseases such as IPF are a valuable resource for studying the course of the disease under current compliance with diagnostic and treatment guidelines and to appreciate local epidemiological particularities. idiopathic interstitial pneumonia idiopathic pulmonary fibrosis registry real life practice Cohort study Medicine R Pascal Zumstein verfasserin aut Sabina Berezowska verfasserin aut Alexander Poellinger verfasserin aut Thomas Geiser verfasserin aut Manuela Funke-Chambour verfasserin aut In Swiss Medical Weekly SMW supporting association (Trägerverein Swiss Medical Weekly SMW), 2003 148(2018), 0102 (DE-627)324825811 (DE-600)2031164-3 14243997 nnns volume:148 year:2018 number:0102 https://doi.org/10.4414/smw.2018.14577 kostenfrei https://doaj.org/article/b6b16cad89aa4f72a2685d3c028d6666 kostenfrei https://www.smw.ch/index.php/smw/article/view/2427 kostenfrei https://doaj.org/toc/1424-3997 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 148 2018 0102
allfieldsGer	10.4414/smw.2018.14577 doi (DE-627)DOAJ085051187 (DE-599)DOAJb6b16cad89aa4f72a2685d3c028d6666 DE-627 ger DE-627 rakwb eng Sabina A. Guler verfasserin aut Idiopathic pulmonary fibrosis in a Swiss interstitial lung disease reference centre 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier BACKGROUND Idiopathic pulmonary fibrosis (IPF) differs substantially from other idiopathic interstitial pneumonias regarding disease trajectory and the appropriate management strategies, making meticulous diagnosis essential. However, patient characteristics and clinical practice vary between clinical trials, and real life and registries provide the opportunity to critically analyse current clinical practices in order to ultimately improve patient care. METHODS: We aimed to identify characteristics of our baseline IPF cohort at initiation of a web-based registry for patients with idiopathic interstitial pneumonia. Baseline and 6-month follow-up data from all consecutive IPF patients consulting at our centre over 2 years were analysed. RESULTS Forty IPF patients were included for baseline and 23 for longitudinal analysis. Besides many similarities to other IPF populations, our cohort included considerably fewer women. Forced vital capacity impairment in our cohort was more severe and mortality prediction poorer than in clinical trials, which emphasises the importance to confirm the applicability of clinical trial results with data from real life settings. CONCLUSION Registries for rare diseases such as IPF are a valuable resource for studying the course of the disease under current compliance with diagnostic and treatment guidelines and to appreciate local epidemiological particularities. idiopathic interstitial pneumonia idiopathic pulmonary fibrosis registry real life practice Cohort study Medicine R Pascal Zumstein verfasserin aut Sabina Berezowska verfasserin aut Alexander Poellinger verfasserin aut Thomas Geiser verfasserin aut Manuela Funke-Chambour verfasserin aut In Swiss Medical Weekly SMW supporting association (Trägerverein Swiss Medical Weekly SMW), 2003 148(2018), 0102 (DE-627)324825811 (DE-600)2031164-3 14243997 nnns volume:148 year:2018 number:0102 https://doi.org/10.4414/smw.2018.14577 kostenfrei https://doaj.org/article/b6b16cad89aa4f72a2685d3c028d6666 kostenfrei https://www.smw.ch/index.php/smw/article/view/2427 kostenfrei https://doaj.org/toc/1424-3997 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 148 2018 0102
allfieldsSound	10.4414/smw.2018.14577 doi (DE-627)DOAJ085051187 (DE-599)DOAJb6b16cad89aa4f72a2685d3c028d6666 DE-627 ger DE-627 rakwb eng Sabina A. Guler verfasserin aut Idiopathic pulmonary fibrosis in a Swiss interstitial lung disease reference centre 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier BACKGROUND Idiopathic pulmonary fibrosis (IPF) differs substantially from other idiopathic interstitial pneumonias regarding disease trajectory and the appropriate management strategies, making meticulous diagnosis essential. However, patient characteristics and clinical practice vary between clinical trials, and real life and registries provide the opportunity to critically analyse current clinical practices in order to ultimately improve patient care. METHODS: We aimed to identify characteristics of our baseline IPF cohort at initiation of a web-based registry for patients with idiopathic interstitial pneumonia. Baseline and 6-month follow-up data from all consecutive IPF patients consulting at our centre over 2 years were analysed. RESULTS Forty IPF patients were included for baseline and 23 for longitudinal analysis. Besides many similarities to other IPF populations, our cohort included considerably fewer women. Forced vital capacity impairment in our cohort was more severe and mortality prediction poorer than in clinical trials, which emphasises the importance to confirm the applicability of clinical trial results with data from real life settings. CONCLUSION Registries for rare diseases such as IPF are a valuable resource for studying the course of the disease under current compliance with diagnostic and treatment guidelines and to appreciate local epidemiological particularities. idiopathic interstitial pneumonia idiopathic pulmonary fibrosis registry real life practice Cohort study Medicine R Pascal Zumstein verfasserin aut Sabina Berezowska verfasserin aut Alexander Poellinger verfasserin aut Thomas Geiser verfasserin aut Manuela Funke-Chambour verfasserin aut In Swiss Medical Weekly SMW supporting association (Trägerverein Swiss Medical Weekly SMW), 2003 148(2018), 0102 (DE-627)324825811 (DE-600)2031164-3 14243997 nnns volume:148 year:2018 number:0102 https://doi.org/10.4414/smw.2018.14577 kostenfrei https://doaj.org/article/b6b16cad89aa4f72a2685d3c028d6666 kostenfrei https://www.smw.ch/index.php/smw/article/view/2427 kostenfrei https://doaj.org/toc/1424-3997 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 148 2018 0102
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authorswithroles_txt_mv	Sabina A. Guler @@aut@@ Pascal Zumstein @@aut@@ Sabina Berezowska @@aut@@ Alexander Poellinger @@aut@@ Thomas Geiser @@aut@@ Manuela Funke-Chambour @@aut@@
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author	Sabina A. Guler
spellingShingle	Sabina A. Guler misc idiopathic interstitial pneumonia misc idiopathic pulmonary fibrosis misc registry misc real life practice misc Cohort study misc Medicine misc R Idiopathic pulmonary fibrosis in a Swiss interstitial lung disease reference centre
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topic_title	Idiopathic pulmonary fibrosis in a Swiss interstitial lung disease reference centre idiopathic interstitial pneumonia idiopathic pulmonary fibrosis registry real life practice Cohort study
topic	misc idiopathic interstitial pneumonia misc idiopathic pulmonary fibrosis misc registry misc real life practice misc Cohort study misc Medicine misc R
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title	Idiopathic pulmonary fibrosis in a Swiss interstitial lung disease reference centre
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title_full	Idiopathic pulmonary fibrosis in a Swiss interstitial lung disease reference centre
author_sort	Sabina A. Guler
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author_browse	Sabina A. Guler Pascal Zumstein Sabina Berezowska Alexander Poellinger Thomas Geiser Manuela Funke-Chambour
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author-letter	Sabina A. Guler
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title_sort	idiopathic pulmonary fibrosis in a swiss interstitial lung disease reference centre
title_auth	Idiopathic pulmonary fibrosis in a Swiss interstitial lung disease reference centre
abstract	BACKGROUND Idiopathic pulmonary fibrosis (IPF) differs substantially from other idiopathic interstitial pneumonias regarding disease trajectory and the appropriate management strategies, making meticulous diagnosis essential. However, patient characteristics and clinical practice vary between clinical trials, and real life and registries provide the opportunity to critically analyse current clinical practices in order to ultimately improve patient care. METHODS: We aimed to identify characteristics of our baseline IPF cohort at initiation of a web-based registry for patients with idiopathic interstitial pneumonia. Baseline and 6-month follow-up data from all consecutive IPF patients consulting at our centre over 2 years were analysed. RESULTS Forty IPF patients were included for baseline and 23 for longitudinal analysis. Besides many similarities to other IPF populations, our cohort included considerably fewer women. Forced vital capacity impairment in our cohort was more severe and mortality prediction poorer than in clinical trials, which emphasises the importance to confirm the applicability of clinical trial results with data from real life settings. CONCLUSION Registries for rare diseases such as IPF are a valuable resource for studying the course of the disease under current compliance with diagnostic and treatment guidelines and to appreciate local epidemiological particularities.
abstractGer	BACKGROUND Idiopathic pulmonary fibrosis (IPF) differs substantially from other idiopathic interstitial pneumonias regarding disease trajectory and the appropriate management strategies, making meticulous diagnosis essential. However, patient characteristics and clinical practice vary between clinical trials, and real life and registries provide the opportunity to critically analyse current clinical practices in order to ultimately improve patient care. METHODS: We aimed to identify characteristics of our baseline IPF cohort at initiation of a web-based registry for patients with idiopathic interstitial pneumonia. Baseline and 6-month follow-up data from all consecutive IPF patients consulting at our centre over 2 years were analysed. RESULTS Forty IPF patients were included for baseline and 23 for longitudinal analysis. Besides many similarities to other IPF populations, our cohort included considerably fewer women. Forced vital capacity impairment in our cohort was more severe and mortality prediction poorer than in clinical trials, which emphasises the importance to confirm the applicability of clinical trial results with data from real life settings. CONCLUSION Registries for rare diseases such as IPF are a valuable resource for studying the course of the disease under current compliance with diagnostic and treatment guidelines and to appreciate local epidemiological particularities.
abstract_unstemmed	BACKGROUND Idiopathic pulmonary fibrosis (IPF) differs substantially from other idiopathic interstitial pneumonias regarding disease trajectory and the appropriate management strategies, making meticulous diagnosis essential. However, patient characteristics and clinical practice vary between clinical trials, and real life and registries provide the opportunity to critically analyse current clinical practices in order to ultimately improve patient care. METHODS: We aimed to identify characteristics of our baseline IPF cohort at initiation of a web-based registry for patients with idiopathic interstitial pneumonia. Baseline and 6-month follow-up data from all consecutive IPF patients consulting at our centre over 2 years were analysed. RESULTS Forty IPF patients were included for baseline and 23 for longitudinal analysis. Besides many similarities to other IPF populations, our cohort included considerably fewer women. Forced vital capacity impairment in our cohort was more severe and mortality prediction poorer than in clinical trials, which emphasises the importance to confirm the applicability of clinical trial results with data from real life settings. CONCLUSION Registries for rare diseases such as IPF are a valuable resource for studying the course of the disease under current compliance with diagnostic and treatment guidelines and to appreciate local epidemiological particularities.
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title_short	Idiopathic pulmonary fibrosis in a Swiss interstitial lung disease reference centre
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Idiopathic pulmonary fibrosis in a Swiss interstitial lung disease reference centre

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