title: Investigating significant health trends in idiopathic pulmonary fibrosis (INSIGHTS-IPF): rationale, aims and design of a nationwide prospective registry.
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
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Internal Medicine V , Comprehensive Pneumology Center, University of Munich and Asklepios Fachkliniken München-Gauting , Munich , Germany.
authors.forename: Juergen
authors.initials: J
authors.lastname: Behr
authors.affiliation: Department of Respiratory Medicine , Hannover Medical School , Hannover , Germany.
authors.forename: Marius M
authors.initials: MM
authors.lastname: Hoeper
authors.affiliation: Department of Pneumology and Respiratory Critical Care Medicine , Thoraxklinik, University of Heidelberg , Heidelberg , Germany.
authors.forename: Michael
authors.initials: M
authors.lastname: Kreuter
authors.affiliation: Department of Epidemiology , German Rheumatism Research Centre, Leibniz Institute , Berlin , Germany.
authors.forename: Jens
authors.initials: J
authors.lastname: Klotsche
authors.affiliation: Department of Respiratory Medicine , University of Leipzig , Leipzig , Germany.
authors.forename: Hubert
authors.initials: H
authors.lastname: Wirtz
authors.affiliation: Medical Faculty , Institute for Clinical Pharmacology, Technical University , Dresden , Germany.
authors.forename: David
authors.initials: D
authors.lastname: Pittrow
keywords: Interstitial Fibrosis; Rare lung diseases