Australian Idiopathic Pulmonary Fibrosis Registry: vital lessons from a national prospective collaborative project

Respirology. 2014 Oct;19(7):1088-91. doi: 10.1111/resp.12358. Epub 2014 Aug 14.


There is little Australian epidemiologic data on idiopathic pulmonary fibrosis (IPF), a relatively uncommon but devastating disease. The vast geographic distances in Australia have been a major impediment for collaborative research into IPF. A collaborative national effort, the Australian IPF Registry, has been formed, launched and is recruiting successfully (n = 359, January 2014). Our experience provides unique insights for others wishing to set up IPF registries and in time for a global IPF registry.

Keywords: Australia; epidemiology; idiopathic pulmonary fibrosis; natural history; registry.

Publication types

  • Letter
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Australia / epidemiology
  • Humans
  • Idiopathic Pulmonary Fibrosis / diagnosis
  • Idiopathic Pulmonary Fibrosis / epidemiology*
  • Idiopathic Pulmonary Fibrosis / therapy
  • Registries*