Idiopathic Pulmonary FibrosiseurIPFregNCT02951416
Clinical Course of Interstitial Lung Diseases: European IPF Registry and Biobank
An observational study of Idiopathic Pulmonary Fibrosis and Idiopathic Interstitial Pneumonia, run by Andreas Guenther at 7 sites in 5 countries.
Trial summary
Born out of the European Union 7th Framework Programme funded project European IPF Network (eurIPFnet), the European IPF Registry (eurIPFreg) has become Europe's leading database of longitudinal data from IPF patients, including control groups of patients with other lung diseases. Read more about this study
- Who is it for?
- Ages 18 years and olderHealthy volunteers can take part
- Conditions the study is for
- Idiopathic Pulmonary Fibrosis, Idiopathic Interstitial Pneumonia, Interstitial Lung Diseases
- What is being tested?
- patient registry (observation and biomaterial sampling)
- How many people
- 2,000 participants
- Where
- 7 sitesin 5 countries
- Study dates
- Sep 2009to Jan 2040
- How long will I take part?
- 60 Months
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
Study population: Patients with Interstitial Lung Diseases
Who may be able to join
- Informed consent signed
Who cannot join
- No informed consent signed
Trial locations and contacts
7 sites in 5 countries.
7 sites in 5 countries
France2 sites
Centre Hospitalier Universitaire Dijon
Dijon
Hopital Bichat Paris
Paris
Germany2 sites
Andreas Guenther
Giessen, 35392
Lungenfachklinik Waldhof Elgershausen
Greifenstein
About this study
Official title: The European IPF Registry - an Internet-based, Pan-European Registry Linked to the European IPF Biobank (eurIPFbank)
Born out of the European Union 7th Framework Programme funded project European IPF Network (eurIPFnet), the European IPF Registry (eurIPFreg) has become Europe's leading database of longitudinal data from IPF patients, including control groups of patients with other lung diseases. The registry was initiated with the intention of creating a permanent and continuously growing record of well defined data on IPF in Europe, in order to increase the chances of finding better treatment options for this devastating disease.
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/).
Read the detailed description
The group's work aims to foster research on Idiopathic Pulmonary Fibrosis (IPF), the most aggressive form of an Idiopathic Interstitial Pneumonia (IIP). Within the eurIPFreg we, the eurIPFreg steering committee and a growing number of external site investigators, aim to describe the natural course of IPF and other IIPs, to identify risk factors that are associated with the evolution of the disease and to sample biomaterials that may serve as underlying basis for translational research activities.
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
- Idiopathic Pulmonary Fibrosis, Idiopathic Interstitial Pneumonia, Interstitial Lung Diseases, Diffuse Parenchymal Lung Diseases
- Being tested
- patient registry (observation and biomaterial sampling)
- Medical subject headings
- Idiopathic Pulmonary Fibrosis, Idiopathic Interstitial Pneumonias, Lung Diseases, Interstitial
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
patient registry (observation and biomaterial sampling)Other
data are collected with patient questionnaires, additionally clinical data are collected at every routine visit and biomaterial is collected
| Study group | Role | What they receive |
|---|---|---|
| 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). Receives: Other: patient registry (observation and biomaterial sampling) | |
| Non-specific interstitial pneumonia | Non-specific interstitial pneumonia (NSIP) based on the histopathological demonstration of an NSIP pattern.
Patient registry (observation and biomaterial sampling). Receives: Other: patient registry (observation and biomaterial sampling) | |
| 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). Receives: Other: patient registry (observation and biomaterial sampling) | |
| 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). Receives: Other: patient registry (observation and biomaterial sampling) | |
| 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). Receives: Other: patient registry (observation and biomaterial sampling) | |
| respiratory bronchiolitis-ILD (RB-ILD) | Histological pattern of RB-ILD or typical clinical and radiological findings. Patient registry (observation and biomaterial sampling). Receives: Other: patient registry (observation and biomaterial sampling) | |
| 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). Receives: Other: patient registry (observation and biomaterial sampling) | |
| 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). Receives: Other: patient registry (observation and biomaterial sampling) | |
| Sarcoidosis | Histological pattern with sarcoid granulomas or typical clinical and radiological findings with a lymphocytosis in BAL.
Patient registry (observation and biomaterial sampling). Receives: Other: patient registry (observation and biomaterial sampling) | |
| Lung Cancer | Histological confirmation of Lung Cancer. Patients will be included as control group.
Patient registry (observation and biomaterial sampling). Receives: Other: patient registry (observation and biomaterial sampling) | |
| 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). Receives: Other: patient registry (observation and biomaterial sampling) | |
| Pulmonary Hypertension | Pulmonary Hypertension (PH) diagnosed through right heart catheterisation. Patients will be included as control group.
Patient registry (observation and biomaterial sampling). Receives: Other: patient registry (observation and biomaterial sampling) | |
| Sleep Apnea | Sleep Apnea diagnosed by polysomnography. Patients will be included as control group.
Patient registry (observation and biomaterial sampling). Receives: Other: patient registry (observation and biomaterial sampling) | |
| 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). Receives: Other: patient registry (observation and biomaterial sampling) | |
| Control/Health Individuals | Healthy volunteers not suffering from any lung disease as control group. Patient registry (observation and biomaterial sampling). Receives: Other: patient registry (observation and biomaterial sampling) |
What is being measured
The primary outcome is the main question the study is designed to answer.
clinical course of patients with Interstitial Lung Diseases (ILD)
change of lung function parameter such as forced vital capacity (FVC), diffusing lung capacity (DLCO) over time mortality symptoms (reported in patients questionnaires)
Measured: 5 years
Secondary outcomes (4)
Comorbidities of patients with ILD
reported in patients and physicians questionnaires
Measured: 5 years
Infections in lung function of patients with ILD
reported in patients and physicians questionnaires
Measured: 5 years
Quality of life of patients with ILD
reported in patients and physicians questionnaires, EQ5D (European quality of life 5-dimensions) questionnaire
Measured: 5 years
Health care utilization of patients with ILD
reported in patients questionnaires
Measured: 5 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted1 Nov 2016 (estimated)
- Study startSep 2009
- Primary completionJan 2025 (estimated)
- Study completionJan 2040 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (10)Papers the sponsor has linked to this study.
- Other trials for Idiopathic Pulmonary FibrosisStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Cross-sectional
- Enrolment
- 2,000 participants (estimated)
- Target duration
- 60 Months
Sponsor and investigators
- Lead sponsor
- Andreas Guenther
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor-investigator, Andreas Guenther, University of Giessen
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02951416
- Sponsor's protocol ID
- EurIPFreg_150609
- Acronym
- eurIPFreg
- Status last verified
- Feb 2024
- First submitted
- 9 Jun 2015
- Last updated
- 28 Feb 2024
- Results posted
- No
- Data monitoring committee
- No
- Individual data sharing
- Undecided
Publications
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.
PubMed 21454892Loeh 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.
PubMed 25551350Krauss E, Tello S, Wilke L, Sommerlad J, Oruqaj G, Sommer N, Reichert M, Hecker A, Windhorst A, Hecker M, Guenther A, Guler SA, Kuhnert S. Post-transplant trajectories of the CRP-to-albumin ratio identify a late-emerging high-risk phenotype in interstitial lung disease. BMC Pulm Med. 2026 Sep 1;26(1):390. doi: 10.1186/s12890-026-04648-7.
PubMed 42681624Krauss 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.
PubMed 39879227Krauss 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.
PubMed 39558302Krauss 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.
PubMed 32325432Krauss 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.
PubMed 31319833Witt 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.
PubMed 30823880Loeh 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.
PubMed 30742809Guenther 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.
PubMed 30055613
Study at a glance
From the registry record, last updated by the sponsor on 28 Feb 2024. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- The European IPF Registry - an Internet-based, Pan-European Registry Linked to the European IPF Biobank (eurIPFbank)
- ClinicalTrials.gov ID
- NCT02951416
- Acronym / sponsor ID
- eurIPFreg / EurIPFreg_150609
- Conditions
- Idiopathic Pulmonary Fibrosis, Idiopathic Interstitial Pneumonia, Interstitial Lung Diseases, Diffuse Parenchymal Lung Diseases
- Study type
- Observational
- Recruitment status
- Active, not recruiting
- Enrolment
- 2,000 participants (estimated)
- Lead sponsor
- Andreas GuentherUniversity, hospital or other
- Study start
- Sep 2009
- Primary completion
- Jan 2025 (estimated)
- Study completion
- Jan 2040 (estimated)
- First posted
- 1 Nov 2016 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
Born out of the European Union 7th Framework Programme funded project European IPF Network (eurIPFnet), the European IPF Registry (eurIPFreg) has become Europe's leading database of longitudinal data from IPF patients, including control groups of patients with other lung diseases. The registry was initiated with the intention of creating a permanent and continuously growing record of well defined data on IPF in Europe, in order to increase the chances of finding better treatment options for this devastating disease.
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/).
Detailed description
The group's work aims to foster research on Idiopathic Pulmonary Fibrosis (IPF), the most aggressive form of an Idiopathic Interstitial Pneumonia (IIP). Within the eurIPFreg we, the eurIPFreg steering committee and a growing number of external site investigators, aim to describe the natural course of IPF and other IIPs, to identify risk factors that are associated with the evolution of the disease and to sample biomaterials that may serve as underlying basis for translational research activities.
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.
Study design
- Observational model
- Cohort
- Time perspective
- Cross-sectional
- Target follow-up
- 60 Months
- Number of arms
- 15
| Arm | Type | Receives |
|---|---|---|
| Idiopathic Pulmonary Fibrosis (IPF) | – | Other: patient registry (observation and biomaterial sampling)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). |
| Non-specific interstitial pneumonia | – | Other: patient registry (observation and biomaterial sampling)Non-specific interstitial pneumonia (NSIP) based on the histopathological demonstration of an NSIP pattern. Patient registry (observation and biomaterial sampling). |
| Cryptogenic organising pneumonia (COP) | – | Other: patient registry (observation and biomaterial sampling)COP characterised histologically by an organising pneumonia with intraluminal organising fibrosis in the alveolar ducts and alveolar spaces. Patient registry (observation and biomaterial sampling). |
| Acute interstitial pneumonia (AIP) | – | Other: patient registry (observation and biomaterial sampling)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). |
| Lymphoid interstitial pneumonia (LIP) | – | Other: patient registry (observation and biomaterial sampling)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). |
| respiratory bronchiolitis-ILD (RB-ILD) | – | Other: patient registry (observation and biomaterial sampling)Histological pattern of RB-ILD or typical clinical and radiological findings. Patient registry (observation and biomaterial sampling). |
| Desquamative Interstitial Pneumonia | – | Other: patient registry (observation and biomaterial sampling)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). |
| Hypersensitivity Pneumonitis | – | Other: patient registry (observation and biomaterial sampling)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). |
| Sarcoidosis | – | Other: patient registry (observation and biomaterial sampling)Histological pattern with sarcoid granulomas or typical clinical and radiological findings with a lymphocytosis in BAL. Patient registry (observation and biomaterial sampling). |
| Lung Cancer | – | Other: patient registry (observation and biomaterial sampling)Histological confirmation of Lung Cancer. Patients will be included as control group. Patient registry (observation and biomaterial sampling). |
| Chronic Obstructive Pulmonary Disease | – | Other: patient registry (observation and biomaterial sampling)Obstructive spirometry and physical history suggesting Chronic Obstructive Pulmonary Disease (COPD). Patients will be included as control group. Patient registry (observation and biomaterial sampling). |
| Pulmonary Hypertension | – | Other: patient registry (observation and biomaterial sampling)Pulmonary Hypertension (PH) diagnosed through right heart catheterisation. Patients will be included as control group. Patient registry (observation and biomaterial sampling). |
| Sleep Apnea | – | Other: patient registry (observation and biomaterial sampling)Sleep Apnea diagnosed by polysomnography. Patients will be included as control group. Patient registry (observation and biomaterial sampling). |
| Asthma | – | Other: patient registry (observation and biomaterial sampling)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). |
| Control/Health Individuals | – | Other: patient registry (observation and biomaterial sampling)Healthy volunteers not suffering from any lung disease as control group. Patient registry (observation and biomaterial sampling). |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
- Study population
- Patients with Interstitial Lung Diseases
Key inclusion criteria (1 listed)
- Informed consent signed
Key exclusion criteria (1 listed)
- No informed consent signed
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| 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 | Other | Acute interstitial pneumonia (AIP), Asthma, Chronic Obstructive Pulmonary Disease, Control/Health Individuals, Cryptogenic organising pneumonia (COP), Desquamative Interstitial Pneumonia, Hypersensitivity Pneumonitis, Idiopathic Pulmonary Fibrosis (IPF), Lung Cancer, Lymphoid interstitial pneumonia (LIP), Non-specific interstitial pneumonia, Pulmonary Hypertension, Sarcoidosis, Sleep Apnea, respiratory bronchiolitis-ILD (RB-ILD) |
Primary outcome
clinical course of patients with Interstitial Lung Diseases (ILD)
Time frame: 5 years
change of lung function parameter such as forced vital capacity (FVC), diffusing lung capacity (DLCO) over time mortality symptoms (reported in patients questionnaires)
4 secondary outcomes
Comorbidities of patients with ILD
Time frame: 5 years
Infections in lung function of patients with ILD
Time frame: 5 years
Quality of life of patients with ILD
Time frame: 5 years
Health care utilization of patients with ILD
Time frame: 5 years
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 28 Feb 2024.
- Background: PubMed 21454892Guenther 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.
- Background: PubMed 25551350Loeh 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.
- Derived from this study: PubMed 42681624Krauss E, Tello S, Wilke L, Sommerlad J, Oruqaj G, Sommer N, Reichert M, Hecker A, Windhorst A, Hecker M, Guenther A, Guler SA, Kuhnert S. Post-transplant trajectories of the CRP-to-albumin ratio identify a late-emerging high-risk phenotype in interstitial lung disease. BMC Pulm Med. 2026 Sep 1;26(1):390. doi: 10.1186/s12890-026-04648-7.
- Derived from this study: PubMed 39879227Krauss 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.
- Derived from this study: PubMed 39558302Krauss 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.
- Derived from this study: PubMed 32325432Krauss 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.
- Derived from this study: PubMed 31319833Krauss 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.
- Derived from this study: PubMed 30823880Witt 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.
- Derived from this study: PubMed 30742809Loeh 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.
- Derived from this study: PubMed 30055613Guenther 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.
- European IPF Registry websiteLink provided by the sponsor.
- Individual participant dataSharing planned: Undecided
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
7 sites in 5 countries: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Idiopathic Pulmonary Fibrosis and Idiopathic Interstitial Pneumonia, run by Andreas Guenther at 7 sites in 5 countries.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 1 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: under way, not looking for participants, as of the sponsor's last update on 28 Feb 2024. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 7 sites in France, Germany, Austria, Italy, United Kingdom. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
clinical course of patients with Interstitial Lung Diseases (ILD) (time frame: 5 years). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT02951416, which also lists 10 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 28 Feb 2024.