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

Yuben Moodley; Nicole Goh; Ian Glaspole; Sacha Macansh; E Haydn Walters; Sally Chapman; Peter Hopkins; Paul N Reynolds; Christopher Zappala; Wendy Cooper; Annabelle Mahar; Samantha Ellis; Samuel McCormack; William Darbishire; Richard Wood-Baker; Tamera J Corte; Australian IPF Registry Steering Committee

doi:10.1111/resp.12358

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.

Authors

Yuben Moodley¹, Nicole Goh, Ian Glaspole, Sacha Macansh, E Haydn Walters, Sally Chapman, Peter Hopkins, Paul N Reynolds, Christopher Zappala, Wendy Cooper, Annabelle Mahar, Samantha Ellis, Samuel McCormack, William Darbishire, Richard Wood-Baker, Tamera J Corte; Australian IPF Registry Steering Committee

Affiliation

¹ Royal Perth Hospital, University of Western Australia, Perth, Australia.

PMID: 25123691
DOI: 10.1111/resp.12358

Abstract

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*