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NCT Number: NCT02951416

Clinical Course of Interstitial Lung Diseases: European IPF Registry and Biobank

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/).

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This study is active but is not currently recruiting participants.

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Key information

Conditions

Idiopathic Pulmonary Fibrosis Diffuse Parenchymal Lung Diseases Idiopathic Interstitial Pneumonia Idiopathic Interstitial Pneumonias Interstitial Lung Diseases Lung Diseases Lung Diseases, Interstitial Pulmonary Fibrosis Respiratory Tract Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Medizinische Universität Wien, Vienna, Austria

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About this study

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.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • Informed consent signed

Exclusion criteria

  • No informed consent signed

Treatment and study plan

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

Primary outcomes

  1. 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)

Secondary outcomes

  1. Comorbidities of patients with ILD

    Time frame: 5 years

    reported in patients and physicians questionnaires

  2. Infections in lung function of patients with ILD

    Time frame: 5 years

    reported in patients and physicians questionnaires

  3. Quality of life of patients with ILD

    Time frame: 5 years

    reported in patients and physicians questionnaires, EQ5D (European quality of life 5-dimensions) questionnaire

  4. Health care utilization of patients with ILD

    Time frame: 5 years

    reported in patients questionnaires

Sponsors and collaborators

Lead sponsor

Andreas Guenther

Other

Registry information

Official study title

The European IPF Registry - an Internet-based, Pan-European Registry Linked to the European IPF Biobank (eurIPFbank)

Acronym: eurIPFreg

Important dates

Study start
2009
Primary completion
2025
Study completion
2040
First posted
Nov 1, 2016
Registry last updated
Feb 28, 2024

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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