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1. Australian Idiopathic Pulmonary Fibrosis Registry: Vital lessons from a national prospective collaborative project.

Author

Moodley, Yuben, Goh, Nicole, Glaspole, Ian, Macansh, Sacha, Walters, E Haydn, Chapman, Sally, Hopkins, Peter, Reynolds, Paul N, Zappala, Christopher, Cooper, Wendy, Mahar, Annabelle, Ellis, Samantha, McCormack, Samuel, Darbishire, William, Wood‐Baker, Richard, and Corte, Tamera J.

Subjects
*PULMONARY fibrosis, *DISEASES, *MANAGEMENT, *PATIENT management, *MEDICAL care, *HEALTH services administration
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. [ABSTRACT FROM AUTHOR]

Published
2014
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