Australian Idiopathic Pulmonary Fibrosis Registry: Vital lessons from a national prospective collaborative project
Authors:
- 14 August 2014
- journal article
- Published by Wiley in Respirology
- Vol. 19 (7) , 1088-1091
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
Funding Information
- Boehringer Ingelheim
- Intermune
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