The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis
Background Since 2009, IPF patients across Europe are recruited into the eurIPFreg, providing epidemiological data and biomaterials for translational research. Methods The registry data are based on patient and physician baseline and follow-up questionnaires, comprising 1700 parameters. The mid- to...
Ausführliche Beschreibung
Autor*in: |
Guenther, Andreas [verfasserIn] |
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E-Artikel |
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Sprache: |
Englisch |
Erschienen: |
2018 |
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Schlagwörter: |
Idiopathic pulmonary fibrosis (IPF) European registry for idiopathic pulmonary fibrosis (eurIPFreg) |
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Anmerkung: |
© The Author(s). 2018 |
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Übergeordnetes Werk: |
Enthalten in: Respiratory research - London : BioMed Central, 2001, 19(2018), 1 vom: 28. Juli |
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Übergeordnetes Werk: |
volume:19 ; year:2018 ; number:1 ; day:28 ; month:07 |
Links: |
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DOI / URN: |
10.1186/s12931-018-0845-5 |
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Katalog-ID: |
SPR028526112 |
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245 | 1 | 4 | |a The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis |
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520 | |a Background Since 2009, IPF patients across Europe are recruited into the eurIPFreg, providing epidemiological data and biomaterials for translational research. Methods The registry data are based on patient and physician baseline and follow-up questionnaires, comprising 1700 parameters. The mid- to long-term objectives of the registry are to provide clues for a better understanding of IPF phenotype sub-clusters, triggering factors and aggravating conditions, regional and environmental characteristics, and of disease behavior and management. Results This paper describes baseline data of 525 IPF subjects recruited from 11/2009 until 10/2016. IPF patients had a mean age of 68.1 years, and seeked medical advice due to insidious dyspnea (90.1%), fatigue (69.2%), and dry coughing (53.2%). A surgical lung biopsy was performed in 32% in 2009, but in only 8% of the cases in 2016, possibly due to increased numbers of cryobiopsy. At the time of inclusion in the eurIPFreg, FVC was 68.4% ± 22.6% of predicted value, DLco ranged at 42.1% ± 17.8% of predicted value (mean value ± SD). Signs of pulmonary hypertension were found in 16.8%. Steroids, immunosuppressants and N-Acetylcysteine declined since 2009, and were replaced by antifibrotics, under which patients showed improved survival (p = 0.001). Conclusions Our data provide important insights into baseline characteristics, diagnostic and management changes as well as outcome data in European IPF patients over time. Trial registration The eurIPFreg and eurIPFbank are listed in ClinicalTrials.gov(NCT02951416). | ||
650 | 4 | |a Idiopathic pulmonary fibrosis (IPF) |7 (dpeaa)DE-He213 | |
650 | 4 | |a European registry for idiopathic pulmonary fibrosis (eurIPFreg) |7 (dpeaa)DE-He213 | |
650 | 4 | |a Interstitial lung diseases (ILD) |7 (dpeaa)DE-He213 | |
700 | 1 | |a Krauss, Ekaterina |4 aut | |
700 | 1 | |a Tello, Silke |4 aut | |
700 | 1 | |a Wagner, Jasmin |4 aut | |
700 | 1 | |a Paul, Bettina |4 aut | |
700 | 1 | |a Kuhn, Stefan |4 aut | |
700 | 1 | |a Maurer, Olga |4 aut | |
700 | 1 | |a Heinemann, Sabine |4 aut | |
700 | 1 | |a Costabel, Ulrich |4 aut | |
700 | 1 | |a Barbero, María Asunción Nieto |4 aut | |
700 | 1 | |a Müller, Veronika |4 aut | |
700 | 1 | |a Bonniaud, Philippe |4 aut | |
700 | 1 | |a Vancheri, Carlo |4 aut | |
700 | 1 | |a Wells, Athol |4 aut | |
700 | 1 | |a Vasakova, Martina |4 aut | |
700 | 1 | |a Pesci, Alberto |4 aut | |
700 | 1 | |a Sofia, Matteo |4 aut | |
700 | 1 | |a Klepetko, Walter |4 aut | |
700 | 1 | |a Seeger, Werner |4 aut | |
700 | 1 | |a Drakopanagiotakis, Fotios |4 aut | |
700 | 1 | |a Crestani, Bruno |4 aut | |
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10.1186/s12931-018-0845-5 doi (DE-627)SPR028526112 (SPR)s12931-018-0845-5-e DE-627 ger DE-627 rakwb eng Guenther, Andreas verfasserin aut The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s). 2018 Background Since 2009, IPF patients across Europe are recruited into the eurIPFreg, providing epidemiological data and biomaterials for translational research. Methods The registry data are based on patient and physician baseline and follow-up questionnaires, comprising 1700 parameters. The mid- to long-term objectives of the registry are to provide clues for a better understanding of IPF phenotype sub-clusters, triggering factors and aggravating conditions, regional and environmental characteristics, and of disease behavior and management. Results This paper describes baseline data of 525 IPF subjects recruited from 11/2009 until 10/2016. IPF patients had a mean age of 68.1 years, and seeked medical advice due to insidious dyspnea (90.1%), fatigue (69.2%), and dry coughing (53.2%). A surgical lung biopsy was performed in 32% in 2009, but in only 8% of the cases in 2016, possibly due to increased numbers of cryobiopsy. At the time of inclusion in the eurIPFreg, FVC was 68.4% ± 22.6% of predicted value, DLco ranged at 42.1% ± 17.8% of predicted value (mean value ± SD). Signs of pulmonary hypertension were found in 16.8%. Steroids, immunosuppressants and N-Acetylcysteine declined since 2009, and were replaced by antifibrotics, under which patients showed improved survival (p = 0.001). Conclusions Our data provide important insights into baseline characteristics, diagnostic and management changes as well as outcome data in European IPF patients over time. Trial registration The eurIPFreg and eurIPFbank are listed in ClinicalTrials.gov(NCT02951416). Idiopathic pulmonary fibrosis (IPF) (dpeaa)DE-He213 European registry for idiopathic pulmonary fibrosis (eurIPFreg) (dpeaa)DE-He213 Interstitial lung diseases (ILD) (dpeaa)DE-He213 Krauss, Ekaterina aut Tello, Silke aut Wagner, Jasmin aut Paul, Bettina aut Kuhn, Stefan aut Maurer, Olga aut Heinemann, Sabine aut Costabel, Ulrich aut Barbero, María Asunción Nieto aut Müller, Veronika aut Bonniaud, Philippe aut Vancheri, Carlo aut Wells, Athol aut Vasakova, Martina aut Pesci, Alberto aut Sofia, Matteo aut Klepetko, Walter aut Seeger, Werner aut Drakopanagiotakis, Fotios aut Crestani, Bruno aut Enthalten in Respiratory research London : BioMed Central, 2001 19(2018), 1 vom: 28. Juli (DE-627)326646485 (DE-600)2041675-1 1465-993X nnns volume:19 year:2018 number:1 day:28 month:07 https://dx.doi.org/10.1186/s12931-018-0845-5 kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER SSG-OLC-PHA 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_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2006 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2031 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2057 GBV_ILN_2061 GBV_ILN_2111 GBV_ILN_2113 GBV_ILN_2153 GBV_ILN_2190 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 19 2018 1 28 07 |
spelling |
10.1186/s12931-018-0845-5 doi (DE-627)SPR028526112 (SPR)s12931-018-0845-5-e DE-627 ger DE-627 rakwb eng Guenther, Andreas verfasserin aut The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s). 2018 Background Since 2009, IPF patients across Europe are recruited into the eurIPFreg, providing epidemiological data and biomaterials for translational research. Methods The registry data are based on patient and physician baseline and follow-up questionnaires, comprising 1700 parameters. The mid- to long-term objectives of the registry are to provide clues for a better understanding of IPF phenotype sub-clusters, triggering factors and aggravating conditions, regional and environmental characteristics, and of disease behavior and management. Results This paper describes baseline data of 525 IPF subjects recruited from 11/2009 until 10/2016. IPF patients had a mean age of 68.1 years, and seeked medical advice due to insidious dyspnea (90.1%), fatigue (69.2%), and dry coughing (53.2%). A surgical lung biopsy was performed in 32% in 2009, but in only 8% of the cases in 2016, possibly due to increased numbers of cryobiopsy. At the time of inclusion in the eurIPFreg, FVC was 68.4% ± 22.6% of predicted value, DLco ranged at 42.1% ± 17.8% of predicted value (mean value ± SD). Signs of pulmonary hypertension were found in 16.8%. Steroids, immunosuppressants and N-Acetylcysteine declined since 2009, and were replaced by antifibrotics, under which patients showed improved survival (p = 0.001). Conclusions Our data provide important insights into baseline characteristics, diagnostic and management changes as well as outcome data in European IPF patients over time. Trial registration The eurIPFreg and eurIPFbank are listed in ClinicalTrials.gov(NCT02951416). Idiopathic pulmonary fibrosis (IPF) (dpeaa)DE-He213 European registry for idiopathic pulmonary fibrosis (eurIPFreg) (dpeaa)DE-He213 Interstitial lung diseases (ILD) (dpeaa)DE-He213 Krauss, Ekaterina aut Tello, Silke aut Wagner, Jasmin aut Paul, Bettina aut Kuhn, Stefan aut Maurer, Olga aut Heinemann, Sabine aut Costabel, Ulrich aut Barbero, María Asunción Nieto aut Müller, Veronika aut Bonniaud, Philippe aut Vancheri, Carlo aut Wells, Athol aut Vasakova, Martina aut Pesci, Alberto aut Sofia, Matteo aut Klepetko, Walter aut Seeger, Werner aut Drakopanagiotakis, Fotios aut Crestani, Bruno aut Enthalten in Respiratory research London : BioMed Central, 2001 19(2018), 1 vom: 28. Juli (DE-627)326646485 (DE-600)2041675-1 1465-993X nnns volume:19 year:2018 number:1 day:28 month:07 https://dx.doi.org/10.1186/s12931-018-0845-5 kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER SSG-OLC-PHA 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_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2006 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2031 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2057 GBV_ILN_2061 GBV_ILN_2111 GBV_ILN_2113 GBV_ILN_2153 GBV_ILN_2190 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 19 2018 1 28 07 |
allfields_unstemmed |
10.1186/s12931-018-0845-5 doi (DE-627)SPR028526112 (SPR)s12931-018-0845-5-e DE-627 ger DE-627 rakwb eng Guenther, Andreas verfasserin aut The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s). 2018 Background Since 2009, IPF patients across Europe are recruited into the eurIPFreg, providing epidemiological data and biomaterials for translational research. Methods The registry data are based on patient and physician baseline and follow-up questionnaires, comprising 1700 parameters. The mid- to long-term objectives of the registry are to provide clues for a better understanding of IPF phenotype sub-clusters, triggering factors and aggravating conditions, regional and environmental characteristics, and of disease behavior and management. Results This paper describes baseline data of 525 IPF subjects recruited from 11/2009 until 10/2016. IPF patients had a mean age of 68.1 years, and seeked medical advice due to insidious dyspnea (90.1%), fatigue (69.2%), and dry coughing (53.2%). A surgical lung biopsy was performed in 32% in 2009, but in only 8% of the cases in 2016, possibly due to increased numbers of cryobiopsy. At the time of inclusion in the eurIPFreg, FVC was 68.4% ± 22.6% of predicted value, DLco ranged at 42.1% ± 17.8% of predicted value (mean value ± SD). Signs of pulmonary hypertension were found in 16.8%. Steroids, immunosuppressants and N-Acetylcysteine declined since 2009, and were replaced by antifibrotics, under which patients showed improved survival (p = 0.001). Conclusions Our data provide important insights into baseline characteristics, diagnostic and management changes as well as outcome data in European IPF patients over time. Trial registration The eurIPFreg and eurIPFbank are listed in ClinicalTrials.gov(NCT02951416). Idiopathic pulmonary fibrosis (IPF) (dpeaa)DE-He213 European registry for idiopathic pulmonary fibrosis (eurIPFreg) (dpeaa)DE-He213 Interstitial lung diseases (ILD) (dpeaa)DE-He213 Krauss, Ekaterina aut Tello, Silke aut Wagner, Jasmin aut Paul, Bettina aut Kuhn, Stefan aut Maurer, Olga aut Heinemann, Sabine aut Costabel, Ulrich aut Barbero, María Asunción Nieto aut Müller, Veronika aut Bonniaud, Philippe aut Vancheri, Carlo aut Wells, Athol aut Vasakova, Martina aut Pesci, Alberto aut Sofia, Matteo aut Klepetko, Walter aut Seeger, Werner aut Drakopanagiotakis, Fotios aut Crestani, Bruno aut Enthalten in Respiratory research London : BioMed Central, 2001 19(2018), 1 vom: 28. Juli (DE-627)326646485 (DE-600)2041675-1 1465-993X nnns volume:19 year:2018 number:1 day:28 month:07 https://dx.doi.org/10.1186/s12931-018-0845-5 kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER SSG-OLC-PHA 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_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2006 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2031 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2057 GBV_ILN_2061 GBV_ILN_2111 GBV_ILN_2113 GBV_ILN_2153 GBV_ILN_2190 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 19 2018 1 28 07 |
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10.1186/s12931-018-0845-5 doi (DE-627)SPR028526112 (SPR)s12931-018-0845-5-e DE-627 ger DE-627 rakwb eng Guenther, Andreas verfasserin aut The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s). 2018 Background Since 2009, IPF patients across Europe are recruited into the eurIPFreg, providing epidemiological data and biomaterials for translational research. Methods The registry data are based on patient and physician baseline and follow-up questionnaires, comprising 1700 parameters. The mid- to long-term objectives of the registry are to provide clues for a better understanding of IPF phenotype sub-clusters, triggering factors and aggravating conditions, regional and environmental characteristics, and of disease behavior and management. Results This paper describes baseline data of 525 IPF subjects recruited from 11/2009 until 10/2016. IPF patients had a mean age of 68.1 years, and seeked medical advice due to insidious dyspnea (90.1%), fatigue (69.2%), and dry coughing (53.2%). A surgical lung biopsy was performed in 32% in 2009, but in only 8% of the cases in 2016, possibly due to increased numbers of cryobiopsy. At the time of inclusion in the eurIPFreg, FVC was 68.4% ± 22.6% of predicted value, DLco ranged at 42.1% ± 17.8% of predicted value (mean value ± SD). Signs of pulmonary hypertension were found in 16.8%. Steroids, immunosuppressants and N-Acetylcysteine declined since 2009, and were replaced by antifibrotics, under which patients showed improved survival (p = 0.001). Conclusions Our data provide important insights into baseline characteristics, diagnostic and management changes as well as outcome data in European IPF patients over time. Trial registration The eurIPFreg and eurIPFbank are listed in ClinicalTrials.gov(NCT02951416). Idiopathic pulmonary fibrosis (IPF) (dpeaa)DE-He213 European registry for idiopathic pulmonary fibrosis (eurIPFreg) (dpeaa)DE-He213 Interstitial lung diseases (ILD) (dpeaa)DE-He213 Krauss, Ekaterina aut Tello, Silke aut Wagner, Jasmin aut Paul, Bettina aut Kuhn, Stefan aut Maurer, Olga aut Heinemann, Sabine aut Costabel, Ulrich aut Barbero, María Asunción Nieto aut Müller, Veronika aut Bonniaud, Philippe aut Vancheri, Carlo aut Wells, Athol aut Vasakova, Martina aut Pesci, Alberto aut Sofia, Matteo aut Klepetko, Walter aut Seeger, Werner aut Drakopanagiotakis, Fotios aut Crestani, Bruno aut Enthalten in Respiratory research London : BioMed Central, 2001 19(2018), 1 vom: 28. Juli (DE-627)326646485 (DE-600)2041675-1 1465-993X nnns volume:19 year:2018 number:1 day:28 month:07 https://dx.doi.org/10.1186/s12931-018-0845-5 kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER SSG-OLC-PHA 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_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2006 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2031 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2057 GBV_ILN_2061 GBV_ILN_2111 GBV_ILN_2113 GBV_ILN_2153 GBV_ILN_2190 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 19 2018 1 28 07 |
allfieldsSound |
10.1186/s12931-018-0845-5 doi (DE-627)SPR028526112 (SPR)s12931-018-0845-5-e DE-627 ger DE-627 rakwb eng Guenther, Andreas verfasserin aut The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis 2018 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s). 2018 Background Since 2009, IPF patients across Europe are recruited into the eurIPFreg, providing epidemiological data and biomaterials for translational research. Methods The registry data are based on patient and physician baseline and follow-up questionnaires, comprising 1700 parameters. The mid- to long-term objectives of the registry are to provide clues for a better understanding of IPF phenotype sub-clusters, triggering factors and aggravating conditions, regional and environmental characteristics, and of disease behavior and management. Results This paper describes baseline data of 525 IPF subjects recruited from 11/2009 until 10/2016. IPF patients had a mean age of 68.1 years, and seeked medical advice due to insidious dyspnea (90.1%), fatigue (69.2%), and dry coughing (53.2%). A surgical lung biopsy was performed in 32% in 2009, but in only 8% of the cases in 2016, possibly due to increased numbers of cryobiopsy. At the time of inclusion in the eurIPFreg, FVC was 68.4% ± 22.6% of predicted value, DLco ranged at 42.1% ± 17.8% of predicted value (mean value ± SD). Signs of pulmonary hypertension were found in 16.8%. Steroids, immunosuppressants and N-Acetylcysteine declined since 2009, and were replaced by antifibrotics, under which patients showed improved survival (p = 0.001). Conclusions Our data provide important insights into baseline characteristics, diagnostic and management changes as well as outcome data in European IPF patients over time. Trial registration The eurIPFreg and eurIPFbank are listed in ClinicalTrials.gov(NCT02951416). Idiopathic pulmonary fibrosis (IPF) (dpeaa)DE-He213 European registry for idiopathic pulmonary fibrosis (eurIPFreg) (dpeaa)DE-He213 Interstitial lung diseases (ILD) (dpeaa)DE-He213 Krauss, Ekaterina aut Tello, Silke aut Wagner, Jasmin aut Paul, Bettina aut Kuhn, Stefan aut Maurer, Olga aut Heinemann, Sabine aut Costabel, Ulrich aut Barbero, María Asunción Nieto aut Müller, Veronika aut Bonniaud, Philippe aut Vancheri, Carlo aut Wells, Athol aut Vasakova, Martina aut Pesci, Alberto aut Sofia, Matteo aut Klepetko, Walter aut Seeger, Werner aut Drakopanagiotakis, Fotios aut Crestani, Bruno aut Enthalten in Respiratory research London : BioMed Central, 2001 19(2018), 1 vom: 28. Juli (DE-627)326646485 (DE-600)2041675-1 1465-993X nnns volume:19 year:2018 number:1 day:28 month:07 https://dx.doi.org/10.1186/s12931-018-0845-5 kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER SSG-OLC-PHA 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_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2006 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2031 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2057 GBV_ILN_2061 GBV_ILN_2111 GBV_ILN_2113 GBV_ILN_2153 GBV_ILN_2190 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 19 2018 1 28 07 |
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Idiopathic pulmonary fibrosis (IPF) European registry for idiopathic pulmonary fibrosis (eurIPFreg) Interstitial lung diseases (ILD) |
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Guenther, Andreas @@aut@@ Krauss, Ekaterina @@aut@@ Tello, Silke @@aut@@ Wagner, Jasmin @@aut@@ Paul, Bettina @@aut@@ Kuhn, Stefan @@aut@@ Maurer, Olga @@aut@@ Heinemann, Sabine @@aut@@ Costabel, Ulrich @@aut@@ Barbero, María Asunción Nieto @@aut@@ Müller, Veronika @@aut@@ Bonniaud, Philippe @@aut@@ Vancheri, Carlo @@aut@@ Wells, Athol @@aut@@ Vasakova, Martina @@aut@@ Pesci, Alberto @@aut@@ Sofia, Matteo @@aut@@ Klepetko, Walter @@aut@@ Seeger, Werner @@aut@@ Drakopanagiotakis, Fotios @@aut@@ Crestani, Bruno @@aut@@ |
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2018-07-28T00:00:00Z |
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Guenther, Andreas |
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Guenther, Andreas misc Idiopathic pulmonary fibrosis (IPF) misc European registry for idiopathic pulmonary fibrosis (eurIPFreg) misc Interstitial lung diseases (ILD) The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis |
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The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis Idiopathic pulmonary fibrosis (IPF) (dpeaa)DE-He213 European registry for idiopathic pulmonary fibrosis (eurIPFreg) (dpeaa)DE-He213 Interstitial lung diseases (ILD) (dpeaa)DE-He213 |
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The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis |
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The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis |
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Guenther, Andreas |
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Guenther, Andreas Krauss, Ekaterina Tello, Silke Wagner, Jasmin Paul, Bettina Kuhn, Stefan Maurer, Olga Heinemann, Sabine Costabel, Ulrich Barbero, María Asunción Nieto Müller, Veronika Bonniaud, Philippe Vancheri, Carlo Wells, Athol Vasakova, Martina Pesci, Alberto Sofia, Matteo Klepetko, Walter Seeger, Werner Drakopanagiotakis, Fotios Crestani, Bruno |
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european ipf registry (euripfreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis |
title_auth |
The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis |
abstract |
Background Since 2009, IPF patients across Europe are recruited into the eurIPFreg, providing epidemiological data and biomaterials for translational research. Methods The registry data are based on patient and physician baseline and follow-up questionnaires, comprising 1700 parameters. The mid- to long-term objectives of the registry are to provide clues for a better understanding of IPF phenotype sub-clusters, triggering factors and aggravating conditions, regional and environmental characteristics, and of disease behavior and management. Results This paper describes baseline data of 525 IPF subjects recruited from 11/2009 until 10/2016. IPF patients had a mean age of 68.1 years, and seeked medical advice due to insidious dyspnea (90.1%), fatigue (69.2%), and dry coughing (53.2%). A surgical lung biopsy was performed in 32% in 2009, but in only 8% of the cases in 2016, possibly due to increased numbers of cryobiopsy. At the time of inclusion in the eurIPFreg, FVC was 68.4% ± 22.6% of predicted value, DLco ranged at 42.1% ± 17.8% of predicted value (mean value ± SD). Signs of pulmonary hypertension were found in 16.8%. Steroids, immunosuppressants and N-Acetylcysteine declined since 2009, and were replaced by antifibrotics, under which patients showed improved survival (p = 0.001). Conclusions Our data provide important insights into baseline characteristics, diagnostic and management changes as well as outcome data in European IPF patients over time. Trial registration The eurIPFreg and eurIPFbank are listed in ClinicalTrials.gov(NCT02951416). © The Author(s). 2018 |
abstractGer |
Background Since 2009, IPF patients across Europe are recruited into the eurIPFreg, providing epidemiological data and biomaterials for translational research. Methods The registry data are based on patient and physician baseline and follow-up questionnaires, comprising 1700 parameters. The mid- to long-term objectives of the registry are to provide clues for a better understanding of IPF phenotype sub-clusters, triggering factors and aggravating conditions, regional and environmental characteristics, and of disease behavior and management. Results This paper describes baseline data of 525 IPF subjects recruited from 11/2009 until 10/2016. IPF patients had a mean age of 68.1 years, and seeked medical advice due to insidious dyspnea (90.1%), fatigue (69.2%), and dry coughing (53.2%). A surgical lung biopsy was performed in 32% in 2009, but in only 8% of the cases in 2016, possibly due to increased numbers of cryobiopsy. At the time of inclusion in the eurIPFreg, FVC was 68.4% ± 22.6% of predicted value, DLco ranged at 42.1% ± 17.8% of predicted value (mean value ± SD). Signs of pulmonary hypertension were found in 16.8%. Steroids, immunosuppressants and N-Acetylcysteine declined since 2009, and were replaced by antifibrotics, under which patients showed improved survival (p = 0.001). Conclusions Our data provide important insights into baseline characteristics, diagnostic and management changes as well as outcome data in European IPF patients over time. Trial registration The eurIPFreg and eurIPFbank are listed in ClinicalTrials.gov(NCT02951416). © The Author(s). 2018 |
abstract_unstemmed |
Background Since 2009, IPF patients across Europe are recruited into the eurIPFreg, providing epidemiological data and biomaterials for translational research. Methods The registry data are based on patient and physician baseline and follow-up questionnaires, comprising 1700 parameters. The mid- to long-term objectives of the registry are to provide clues for a better understanding of IPF phenotype sub-clusters, triggering factors and aggravating conditions, regional and environmental characteristics, and of disease behavior and management. Results This paper describes baseline data of 525 IPF subjects recruited from 11/2009 until 10/2016. IPF patients had a mean age of 68.1 years, and seeked medical advice due to insidious dyspnea (90.1%), fatigue (69.2%), and dry coughing (53.2%). A surgical lung biopsy was performed in 32% in 2009, but in only 8% of the cases in 2016, possibly due to increased numbers of cryobiopsy. At the time of inclusion in the eurIPFreg, FVC was 68.4% ± 22.6% of predicted value, DLco ranged at 42.1% ± 17.8% of predicted value (mean value ± SD). Signs of pulmonary hypertension were found in 16.8%. Steroids, immunosuppressants and N-Acetylcysteine declined since 2009, and were replaced by antifibrotics, under which patients showed improved survival (p = 0.001). Conclusions Our data provide important insights into baseline characteristics, diagnostic and management changes as well as outcome data in European IPF patients over time. Trial registration The eurIPFreg and eurIPFbank are listed in ClinicalTrials.gov(NCT02951416). © The Author(s). 2018 |
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The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis |
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Krauss, Ekaterina Tello, Silke Wagner, Jasmin Paul, Bettina Kuhn, Stefan Maurer, Olga Heinemann, Sabine Costabel, Ulrich Barbero, María Asunción Nieto Müller, Veronika Bonniaud, Philippe Vancheri, Carlo Wells, Athol Vasakova, Martina Pesci, Alberto Sofia, Matteo Klepetko, Walter Seeger, Werner Drakopanagiotakis, Fotios Crestani, Bruno |
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score |
7.399905 |