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, Joanne Fuller, Mary McAlister, Emily Stevens, Karen Symons

Research output: Contribution to journalArticleOtherpeer-review

24 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)1088-1091
Number of pages4
JournalRespirology
Volume19
Issue number7
DOIs
Publication statusPublished - 1 Jan 2014
Externally publishedYes

Keywords

  • Australia
  • Epidemiology
  • Idiopathic pulmonary fibrosis
  • Natural history
  • Registry

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