The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis
dc.contributor.author | Guenther, Andreas | |
dc.contributor.author | Krauss, Ekaterina | |
dc.contributor.author | Tello, Silke | |
dc.contributor.author | Wagner, Jasmin | |
dc.contributor.author | Paul, Bettina | |
dc.contributor.author | Kuhn, Stefan | |
dc.contributor.author | Maurer, Olga | |
dc.contributor.author | Heinemann, Sabine | |
dc.contributor.author | Costabel, Ulrich | |
dc.contributor.author | Barbero, María Asunción Nieto | |
dc.contributor.author | Müller, Veronika | |
dc.contributor.author | Bonniaud, Philippe | |
dc.contributor.author | Vancheri, Carlo | |
dc.contributor.author | Wells, Athol | |
dc.contributor.author | Vasakova, Martina | |
dc.contributor.author | Pesci, Alberto | |
dc.contributor.author | Sofia, Matteo | |
dc.contributor.author | Klepetko, Walter | |
dc.contributor.author | Seeger, Werner | |
dc.contributor.author | Drakopanagiotakis, Fotios | |
dc.contributor.author | Crestani, Bruno | |
dc.date.accessioned | 2022-11-18T09:54:53Z | |
dc.date.available | 2020-08-03T06:56:35Z | |
dc.date.available | 2022-11-18T09:54:53Z | |
dc.date.issued | 2018 | |
dc.description.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). | en |
dc.identifier.uri | http://nbn-resolving.de/urn:nbn:de:hebis:26-opus-153414 | |
dc.identifier.uri | https://jlupub.ub.uni-giessen.de//handle/jlupub/9539 | |
dc.identifier.uri | http://dx.doi.org/10.22029/jlupub-8927 | |
dc.language.iso | en | de_DE |
dc.rights | Namensnennung 4.0 International | * |
dc.rights.uri | https://creativecommons.org/licenses/by/4.0/ | * |
dc.subject | idiopathic pulmonary fibrosis (IPF) | en |
dc.subject | European registry for idiopathic pulmonary fibrosis (eurIPFreg) | en |
dc.subject | interstitial lung diseases (ILD) | en |
dc.subject.ddc | ddc:610 | de_DE |
dc.title | The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis | en |
dc.type | article | de_DE |
local.affiliation | FB 11 - Medizin | de_DE |
local.opus.fachgebiet | Medizin | de_DE |
local.opus.id | 15341 | |
local.opus.institute | Medizinische Klinik II | de_DE |
local.source.freetext | Respiratory Research 19, 141 | de_DE |
local.source.uri | https://doi.org/10.1186/s12931-018-0845-5 |
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