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[Characteristics and management of idiopathic pulmonary fibrosis: INSIGHTS-IPF registry]

J Behr1, M M Hoeper, M Kreuter

  • 1Klinik III für Pneumologie, Allergologie, Schlaf- und Beatmungsmedizin, Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil GmbH, Bochum. Juergen.Behr@bergmannsheil.de

Deutsche Medizinische Wochenschrift (1946)
|November 29, 2012
PubMed

Insights

Idiopathic pulmonary fibrosis (IPF) is a rare lung disease with limited treatments. The INSIGHTS-IPF registry collects data to improve understanding and management of IPF patients in Europe.

Area of Science:

  • Pulmonology
  • Rare Diseases
  • Clinical Research

Background:

  • Idiopathic pulmonary fibrosis (IPF) is a rare, progressive lung disease with poor prognosis and limited treatment options.
  • Existing data on IPF patient characteristics and management in Europe are scarce.
  • The mean survival time for newly diagnosed IPF patients is approximately 2-3 years.

Purpose of the Study:

  • To establish the INSIGHTS-IPF prospective registry for documenting incident and prevalent IPF cases in Europe.
  • To collect comprehensive data on IPF patient characteristics, diagnostics, and management.
  • To gather information on clinical outcomes, quality of life, and healthcare resource utilization in IPF patients.

Main Methods:

  • Prospective, observational registry study.
  • Inclusion of incident and prevalent patients with a confirmed IPF diagnosis.
  • Data collection across 30 centers, aiming to enroll 500 patients.

Main Results:

  • Data collection is ongoing; specific results not yet available as the registry is newly initiated.
  • The registry aims to provide a detailed European dataset on IPF.

Conclusions:

  • The INSIGHTS-IPF registry is expected to yield valuable insights into IPF patient profiles and treatment patterns.
  • Long-term data from this registry will aid in optimizing the management of IPF.
  • This initiative addresses the need for comprehensive European data on this rare disease.

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