Clinical Course of Interstitial Lung Diseases: European IPF Registry and Biobank
NCT ID: NCT02951416
Last Updated: 2024-02-28
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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ACTIVE_NOT_RECRUITING
2000 participants
OBSERVATIONAL
2009-09-30
2040-01-31
Brief Summary
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Clinical colleagues who would like to actively participate (both in terms of patient recruitment and data analysis) are invited to contact us (http://www.pulmonary-fibrosis.net/).
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Detailed Description
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IPF and non-specific interstitial pneumonia (NSIP), as well as the other entities of IIPs (cryptogenic organizing pneumonia, COP; desquamative interstitial pneumonia, DIP; respiratory bronchiolitis interstitial lung disease, RB-ILD; lymphoid interstitial pneumonia, LIP; acute interstitial pneumonia, AIP) are frequently progressive, fibroproliferative diseases of unknown etiology, affecting the lung parenchyma. Patients with IPF have the most devastating prognosis within the group of IIPs, with a median survival rate of 2-3 years.
Conditions
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Study Design
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COHORT
CROSS_SECTIONAL
Study Groups
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Idiopathic Pulmonary Fibrosis (IPF)
IPF diagnosis according to the guidelines of 2011 (AJRCCM 2011; 183:788). For patients diagnosed prior to 2011, the criteria of the consensus statement 2000 apply (AJRCCM 2000;161:646).
Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Non-specific interstitial pneumonia
Non-specific interstitial pneumonia (NSIP) based on the histopathological demonstration of an NSIP pattern.
Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Cryptogenic organising pneumonia (COP)
COP characterised histologically by an organising pneumonia with intraluminal organising fibrosis in the alveolar ducts and alveolar spaces.
Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Acute interstitial pneumonia (AIP)
Histological pattern of diffuse alveolar damage (DAD), characterised by hyaline membranes, alveolar oedema and a marked interstitial and alveolar inflammatory reaction.
Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Lymphoid interstitial pneumonia (LIP)
Histological pattern of LIP primary or secondary (e.g. rheumatoid arthritis, Sjögren's syndrome, pernicious anaemia, chronic active hepatitis, systemic lupus erythematosus (SLE), primary biliary cirrhosis, myasthenia gravis, severe immune deficiency syndromes (AIDS)).
Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
respiratory bronchiolitis-ILD (RB-ILD)
Histological pattern of RB-ILD or typical clinical and radiological findings. Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Desquamative Interstitial Pneumonia
Histological pattern of Desquamative Interstitial Pneumonia (DIP). The picture is similar to RB-ILD, but the distribution pattern is much more homogeneous and does not even have the bronchiolocentric distribution.
Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Hypersensitivity Pneumonitis
Hypersensitivity Pneumonitis (HP) characterized by exposure to inhaled organic antigens and development of antibodies. Typical clinical and radiological findings, lymphocytosis in bronchoalveolar lavage (BAL) or histology showing HP granulomas.
Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Sarcoidosis
Histological pattern with sarcoid granulomas or typical clinical and radiological findings with a lymphocytosis in BAL.
Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Lung Cancer
Histological confirmation of Lung Cancer. Patients will be included as control group.
Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Chronic Obstructive Pulmonary Disease
Obstructive spirometry and physical history suggesting Chronic Obstructive Pulmonary Disease (COPD). Patients will be included as control group.
Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Pulmonary Hypertension
Pulmonary Hypertension (PH) diagnosed through right heart catheterisation. Patients will be included as control group.
Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Sleep Apnea
Sleep Apnea diagnosed by polysomnography. Patients will be included as control group.
Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Asthma
Asthma diagnosed by positive bronchoprovocation test and typical history or bronchoreversibility in the lung function measurement or through peak flow measurement. Patients will be included as control group.
Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Control/Health Individuals
Healthy volunteers not suffering from any lung disease as control group. Patient registry (observation and biomaterial sampling).
patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Interventions
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patient registry (observation and biomaterial sampling)
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
Eligibility Criteria
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Inclusion Criteria
Exclusion Criteria
18 Years
ALL
Yes
Sponsors
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Andreas Guenther
OTHER
Responsible Party
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Andreas Guenther
Professor of Internal Medicine
Locations
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Medizinische Universität Wien
Vienna, , Austria
Centre Hospitalier Universitaire Dijon
Dijon, , France
Hopital Bichat Paris
Paris, , France
Andreas Guenther
Giessen, , Germany
Lungenfachklinik Waldhof Elgershausen
Greifenstein, , Germany
Università degli Studi di Catania
Catania, , Italy
Royal Brompton Hospital
London, , United Kingdom
Countries
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References
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Guenther A; European IPF Network. The European IPF Network: towards better care for a dreadful disease. Eur Respir J. 2011 Apr;37(4):747-8. doi: 10.1183/09031936.00012111. No abstract available.
Loeh B, Drakopanagiotakis F, Bandelli GP, von der Beck D, Tello S, Cordani E, Rizza E, Barrocu L, Markart P, Seeger W, Guenther A, Albera C. Intraindividual response to treatment with pirfenidone in idiopathic pulmonary fibrosis. Am J Respir Crit Care Med. 2015 Jan 1;191(1):110-3. doi: 10.1164/rccm.201406-1106LE. No abstract available.
Krauss E, Claas LH, Tello S, Naumann J, Wobisch S, Kuhn S, Majeed RW, Moor K, Molina-Molina M, Byrne O, Borton R, Wijsenbeek MS, Hirani N, Vancheri C, Crestani B, Guenther A; eurILDreg investigators. European ILD registry algorithm for self-assessment in interstitial lung diseases (eurILDreg ASA-ILD). PLoS One. 2025 Jan 29;20(1):e0316484. doi: 10.1371/journal.pone.0316484. eCollection 2025.
Krauss E, Tello S, Naumann J, Wobisch S, Ruppert C, Kuhn S, Mahavadi P, Majeed RW, Bonniaud P, Molina-Molina M, Wells A, Hirani N, Vancheri C, Walsh S, Griese M, Crestani B, Guenther A; further eurILDreg investigators; RARE-ILD investigators. Protocol and research program of the European registry and biobank for interstitial lung diseases (eurILDreg). BMC Pulm Med. 2024 Nov 18;24(1):572. doi: 10.1186/s12890-024-03389-9.
Krauss E, Haberer J, Barreto G, Degen M, Seeger W, Guenther A. Recognition of breathprints of lung cancer and chronic obstructive pulmonary disease using the Aeonose(R) electronic nose. J Breath Res. 2020 Jul 24;14(4):046004. doi: 10.1088/1752-7163/ab8c50.
Krauss E, Gehrken G, Drakopanagiotakis F, Tello S, Dartsch RC, Maurer O, Windhorst A, von der Beck D, Griese M, Seeger W, Guenther A. Clinical characteristics of patients with familial idiopathic pulmonary fibrosis (f-IPF). BMC Pulm Med. 2019 Jul 18;19(1):130. doi: 10.1186/s12890-019-0895-6.
Witt S, Krauss E, Barbero MAN, Muller V, Bonniaud P, Vancheri C, Wells AU, Vasakova M, Pesci A, Klepetko W, Seeger W, Crestani B, Leidl R, Holle R, Schwarzkopf L, Guenther A. Psychometric properties and minimal important differences of SF-36 in Idiopathic Pulmonary Fibrosis. Respir Res. 2019 Mar 1;20(1):47. doi: 10.1186/s12931-019-1010-5.
Loeh B, Brylski LT, von der Beck D, Seeger W, Krauss E, Bonniaud P, Crestani B, Vancheri C, Wells AU, Markart P, Breithecker A, Guenther A. Lung CT Densitometry in Idiopathic Pulmonary Fibrosis for the Prediction of Natural Course, Severity, and Mortality. Chest. 2019 May;155(5):972-981. doi: 10.1016/j.chest.2019.01.019. Epub 2019 Feb 8.
Guenther A, Krauss E, Tello S, Wagner J, Paul B, Kuhn S, Maurer O, Heinemann S, Costabel U, Barbero MAN, Muller V, Bonniaud P, Vancheri C, Wells A, Vasakova M, Pesci A, Sofia M, Klepetko W, Seeger W, Drakopanagiotakis F, Crestani B. The European IPF registry (eurIPFreg): baseline characteristics and survival of patients with idiopathic pulmonary fibrosis. Respir Res. 2018 Jul 28;19(1):141. doi: 10.1186/s12931-018-0845-5.
Related Links
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European IPF Registry website
Other Identifiers
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EurIPFreg_150609
Identifier Type: -
Identifier Source: org_study_id
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