title: 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.
authors.affiliation: Royal Perth Hospital, University of Western Australia, Perth, Australia.
authors.forename: Yuben
authors.initials: Y
authors.lastname: Moodley
authors.forename: Nicole
authors.initials: N
authors.lastname: Goh
authors.forename: Ian
authors.initials: I
authors.lastname: Glaspole
authors.forename: Sacha
authors.initials: S
authors.lastname: Macansh
authors.forename: E Haydn
authors.initials: EH
authors.lastname: Walters
authors.forename: Sally
authors.initials: S
authors.lastname: Chapman
authors.forename: Peter
authors.initials: P
authors.lastname: Hopkins
authors.forename: Paul N
authors.initials: PN
authors.lastname: Reynolds
authors.forename: Christopher
authors.initials: C
authors.lastname: Zappala
authors.forename: Wendy
authors.initials: W
authors.lastname: Cooper
authors.forename: Annabelle
authors.initials: A
authors.lastname: Mahar
authors.forename: Samantha
authors.initials: S
authors.lastname: Ellis
authors.forename: Samuel
authors.initials: S
authors.lastname: McCormack
authors.forename: William
authors.initials: W
authors.lastname: Darbishire
authors.forename: Richard
authors.initials: R
authors.lastname: Wood-Baker
authors.forename: Tamera J
authors.initials: TJ
authors.lastname: Corte
mesh_terms: D001315:Australia / Q000453:epidemiology; D006801:Humans; D054990:Idiopathic Pulmonary Fibrosis / Q000175:diagnosis / Q000453:epidemiology* / Q000628:therapy; D012042:Registries
keywords: Australia; epidemiology; idiopathic pulmonary fibrosis; natural history; registry