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

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

Yuben Moodley  1 , 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
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Australian Idiopathic Pulmonary Fibrosis Registry: vital lessons from a national prospective collaborative project

Yuben Moodley et al. Respirology. 2014 Oct.

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.

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