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Investigating significant health trends in idiopathic pulmonary fibrosis (INSIGHTS-IPF): rationale, aims and design of a nationwide prospective registry
  1. Juergen Behr1,
  2. Marius M Hoeper2,
  3. Michael Kreuter3,
  4. Jens Klotsche4,
  5. Hubert Wirtz5 and
  6. David Pittrow6
  1. 1Department of Internal Medicine V, Comprehensive Pneumology Center, University of Munich and Asklepios Fachkliniken München-Gauting, Munich, Germany
  2. 2Department of Respiratory Medicine, Hannover Medical School, Hannover, Germany
  3. 3Department of Pneumology and Respiratory Critical Care Medicine, Thoraxklinik, University of Heidelberg, Heidelberg, Germany
  4. 4Department of Epidemiology, German Rheumatism Research Centre, Leibniz Institute, Berlin, Germany
  5. 5Department of Respiratory Medicine, University of Leipzig, Leipzig, Germany
  6. 6Medical Faculty, Institute for Clinical Pharmacology, Technical University, Dresden, Germany
  1. Correspondence to Prof. Dr Juergen Behr; j.behr{at}asklepios.com

Abstract

Background Guidelines on the diagnosis and management of idiopathic pulmonary fibrosis (IPF), a rare manifestation of chronic progressive fibrosing interstitial pneumonia, have been updated by ATS/ERS/JRS/ALAT in 2011. In Europe, data are limited on the characteristics and management of such patients.

Methods/design Investigating significant health trends (INSIGHTS)-IPF is a prospective observational longitudinal registry designed to describe the characteristics and management of newly diagnosed (incident) and prevalent patients with IPF on the long term. The registry uses a non-probability sampling approach to collect data on characteristics, therapeutic interventions, health-related quality of life and health economic parameters. At least 500 patients in ambulatory care will be included consecutively in about 30 centres. The study has been initiated in November 2012, and currently (December 2013) follows 344 patients. ClinTrials.gov identifier is NCT01695408.

Discussion INSIGHTS-IPF documents one of the largest IPF cohorts in Europe. The registry is expected to provide much-needed data on the characteristics and management situation of patients with IPF in Germany. It will allow comparisons with other countries. Gap analyses based on current guidelines for management of these patients will be possible.

  • Rare lung diseases
  • Interstitial Fibrosis

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