Australian Idiopathic Pulmonary Fibrosis Registry: Vital lessons from a national prospective collaborative project. Issue 7 (14th August 2014)

• Record Type: Journal Article
• Authors: 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; Corte, Tamera J.; Australian IPF Registry Steering Committee
• Is Part Of: Respirology. Volume 19:Issue 7(2014)
• Page Start: 1088
• Page End: 1091
• Publication Date: 2014-08-14
• Subjects: Respiratory organs -- Diseases -- Periodicals; Respiratory organs -- Periodicals; 612.2
• DOI: 10.1111/resp.12358
• Languages: English
• ISSNs: 1323-7799

Abstract

<abstract abstract-type="main"> <title> <x xml:space="preserve">Abstract</x> </title> <p>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 (<italic>n</italic> = 359, January 2014). Our experience provides unique insights for others wishing to set up IPF registries and in time for a global IPF registry.</p> </abstract>