Early Diagnosis of Pulmonary Fibrosis - Diagnostic Delay

  • STATUS
    Recruiting
  • End date
    Dec 9, 2023
  • participants needed
    300
  • sponsor
    Nils Hoyer
Updated on 23 February 2022

Summary

Patients with newly diagnosed IPF are investigated for the diagnostic delay before a diagnosis of IPF is made.

Description

Pulmonary fibrosis can be secondary to connective-tissue disease, environmental exposure, or drug toxicity, but it can also appear sporadically without any known cause, i.e. idiopathic interstitial pneumonitis (IIP). Idiopathic pulmonary fibrosis (IPF) is the commonest IIP and usually follows a rapidly progressive course with a short median survival time.

IPF is often diagnosed after a long diagnostic delay, which also affects the prognosis. As new anti-fibrotic treatments have been approved, and awareness of IPF is rising, the diagnostic delay and its implications can be expected to be changing. Also, the new diagnostic guidelines of 2011 could change the diagnostic delay. In order to reduce the diagnostic delay, it is important to investigate the health care utilization and decisions made by healthcare professionals in the period before the final diagnosis is made.

This study will prospectively include all patients at the two centres in Denmark where patients are treated for IPF and has thus a good opportunity to include the majority of incident cases of IPF in Denmark. Patients are included immediately after the diagnosis which reduces recall bias. The database will include both patient reported data and objective data from national registries and patient records. A main focus is the distribution of the diagnostic delay between patient and different health care providers, and the health care utilization by the patients before a diagnosis of IPF is made. Risk factors for a delayed diagnosis are investigated. The importance of the diagnostic delay for the prognosis and the course of the disease will also be investigated.

The database created in this study will also be used for future research in IPF.

Details
Condition Idiopathic Pulmonary Fibrosis
Clinical Study IdentifierNCT02772549
SponsorNils Hoyer
Last Modified on23 February 2022

Eligibility

Yes No Not Sure

Inclusion Criteria

Diagnosis of IPF according to international guidelines

Exclusion Criteria

Unable to provide written informed consent
Age below 18 years
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