Australian idiopathic pulmonary fibrosis registry: Vital lessons from a national prospective collaborative project

Yuben Moodley, N. Goh, I.N. Glaspole, S. Macansh, E. Haydn Walters, S.A. Chapman, P.M.A. Hopkins, P.N. Reynolds, C.J. Zappala, W. Cooper, A.M. Mahar, S.J. Ellis, S. Mccormack, W. Darbishire, R.R. Wood-Baker, T.J. Corte

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Abstract

© 2014 Asian Pacific Society of Respirology. 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.
Original languageEnglish
Pages (from-to)1088-1091
JournalRespirology
Volume19
Issue number7
DOIs
Publication statusPublished - 2014

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Moodley, Y., Goh, N., Glaspole, I. N., Macansh, S., Haydn Walters, E., Chapman, S. A., ... Corte, T. J. (2014). Australian idiopathic pulmonary fibrosis registry: Vital lessons from a national prospective collaborative project. Respirology, 19(7), 1088-1091. https://doi.org/10.1111/resp.12358
Moodley, Yuben ; Goh, N. ; Glaspole, I.N. ; Macansh, S. ; Haydn Walters, E. ; Chapman, S.A. ; Hopkins, P.M.A. ; Reynolds, P.N. ; Zappala, C.J. ; Cooper, W. ; Mahar, A.M. ; Ellis, S.J. ; Mccormack, S. ; Darbishire, W. ; Wood-Baker, R.R. ; Corte, T.J. / Australian idiopathic pulmonary fibrosis registry: Vital lessons from a national prospective collaborative project. In: Respirology. 2014 ; Vol. 19, No. 7. pp. 1088-1091.
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Moodley, Y, Goh, N, Glaspole, IN, Macansh, S, Haydn Walters, E, Chapman, SA, Hopkins, PMA, Reynolds, PN, Zappala, CJ, Cooper, W, Mahar, AM, Ellis, SJ, Mccormack, S, Darbishire, W, Wood-Baker, RR & Corte, TJ 2014, 'Australian idiopathic pulmonary fibrosis registry: Vital lessons from a national prospective collaborative project' Respirology, vol. 19, no. 7, pp. 1088-1091. https://doi.org/10.1111/resp.12358

Australian idiopathic pulmonary fibrosis registry: Vital lessons from a national prospective collaborative project. / Moodley, Yuben; Goh, N.; Glaspole, I.N.; Macansh, S.; Haydn Walters, E.; Chapman, S.A.; Hopkins, P.M.A.; Reynolds, P.N.; Zappala, C.J.; Cooper, W.; Mahar, A.M.; Ellis, S.J.; Mccormack, S.; Darbishire, W.; Wood-Baker, R.R.; Corte, T.J.

In: Respirology, Vol. 19, No. 7, 2014, p. 1088-1091.

Research output: Contribution to journalArticle

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AU - Goh, N.

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AU - Haydn Walters, E.

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AU - Hopkins, P.M.A.

AU - Reynolds, P.N.

AU - Zappala, C.J.

AU - Cooper, W.

AU - Mahar, A.M.

AU - Ellis, S.J.

AU - Mccormack, S.

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AU - Wood-Baker, R.R.

AU - Corte, T.J.

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AB - © 2014 Asian Pacific Society of Respirology. 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.

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