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

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.