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

Last updated: February 27, 2024
Sponsor: Andreas Guenther
Overall Status: Active - Not Recruiting

Phase

N/A

Condition

Cystic Fibrosis

Pulmonary Fibrosis

Scar Tissue

Treatment

patient registry (observation and biomaterial sampling)

Clinical Study ID

NCT02951416
EurIPFreg_150609
  • Ages > 18
  • All Genders
  • Accepts Healthy Volunteers

Study 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. 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/).

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • Informed consent signed

Exclusion

Exclusion Criteria:

  • No informed consent signed

Study Design

Total Participants: 2000
Treatment Group(s): 1
Primary Treatment: patient registry (observation and biomaterial sampling)
Phase:
Study Start date:
September 01, 2009
Estimated Completion Date:
January 31, 2040

Study 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.

Connect with a study center

  • Medizinische Universität Wien

    Vienna,
    Austria

    Site Not Available

  • Centre Hospitalier Universitaire Dijon

    Dijon,
    France

    Site Not Available

  • Hopital Bichat Paris

    Paris,
    France

    Site Not Available

  • Lungenfachklinik Waldhof Elgershausen

    Elgershausen. Greifenstein,
    Germany

    Site Not Available

  • Andreas Guenther

    Giessen, 35392
    Germany

    Site Not Available

  • Lungenfachklinik Waldhof Elgershausen

    Greifenstein,
    Germany

    Site Not Available

  • Università degli Studi di Catania

    Catania,
    Italy

    Site Not Available

  • Royal Brompton Hospital

    London,
    United Kingdom

    Site Not Available

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