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Australian Idiopathic Pulmonary Fibrosis Registry: Vital lessons from a national prospective collaborative project
journal contribution
posted on 2023-05-21, 23:55 authored by Moodley, Y, Goh, N, Glaspole, I, Macansh, S, Eugene WaltersEugene Walters, Chapman, S, Hopkins, P, Reynolds, PN, Zappala, C, Cooper, W, Mahar, A, Ellis, S, McCormack, S, Darbishire, W, Wood-Baker, R, Corte, TJThere 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
Funding
National Health & Medical Research Council
History
Publication title
RespirologyVolume
19Pagination
1088-1091ISSN
1323-7799Department/School
Tasmanian School of MedicinePublisher
Blackwell Publishing AsiaPlace of publication
54 University St, P O Box 378, Carlton, Australia, Victoria, 3053Repository Status
- Restricted