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

Yuben Moodley; Nicole Goh; Ian Glaspole; Sacha Macansh; E. Haydn Walters; Sally Chapman; Peter Hopkins; Paul N. Reynolds; Christopher Zappala; Wendy Cooper; Annabelle Mahar; Samantha Ellis; Samuel McCormack; William Darbishire; Richard Wood-Baker; Tamera J. Corte; Joanne Fuller; Mary McAlister; Emily Stevens; Karen Symons

doi:10.1111/resp.12358

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

Yuben Moodley, Nicole Goh, Ian Glaspole, Sacha Macansh, E. Haydn Walters, Sally Chapman, Peter Hopkins, Paul N. Reynolds, Christopher Zappala, Wendy Cooper, Annabelle Mahar, Samantha Ellis, Samuel McCormack, William Darbishire, Richard Wood-Baker, Tamera J. Corte, Joanne Fuller, Mary McAlister, Emily Stevens, Karen Symons

Research output: Contribution to journal › Article › Other › peer-review

29 Citations (Scopus)

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.

Original language	English
Pages (from-to)	1088-1091
Number of pages	4
Journal	Respirology
Volume	19
Issue number	7
DOIs	https://doi.org/10.1111/resp.12358
Publication status	Published - 1 Jan 2014
Externally published	Yes

Keywords

Australia
Epidemiology
Idiopathic pulmonary fibrosis
Natural history
Registry

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10.1111/resp.12358

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Moodley, Y., Goh, N., Glaspole, I., Macansh, S., Walters, E. H., Chapman, S., Hopkins, P., Reynolds, P. N., Zappala, C., Cooper, W., Mahar, A., Ellis, S., McCormack, S., Darbishire, W., Wood-Baker, R., Corte, T. J., Fuller, J., McAlister, M., Stevens, E., & Symons, K. (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

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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",

author = "Yuben Moodley and Nicole Goh and Ian Glaspole and Sacha Macansh and Walters, {E. Haydn} and Sally Chapman and Peter Hopkins and Reynolds, {Paul N.} and Christopher Zappala and Wendy Cooper and Annabelle Mahar and Samantha Ellis and Samuel McCormack and William Darbishire and Richard Wood-Baker and Corte, {Tamera J.} and Joanne Fuller and Mary McAlister and Emily Stevens and Karen Symons",

year = "2014",

month = jan,

day = "1",

doi = "10.1111/resp.12358",

language = "English",

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Moodley, Y, Goh, N, Glaspole, I, Macansh, S, Walters, EH, Chapman, S, Hopkins, P, Reynolds, PN, Zappala, C, Cooper, W, Mahar, A, Ellis, S, McCormack, S, Darbishire, W, Wood-Baker, R, Corte, TJ, Fuller, J, McAlister, M, Stevens, E & Symons, K 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

TY - JOUR

T1 - Australian idiopathic pulmonary fibrosis registry

T2 - Vital lessons from a national prospective collaborative project

AU - Moodley, Yuben

AU - Goh, Nicole

AU - Glaspole, Ian

AU - Macansh, Sacha

AU - Walters, E. Haydn

AU - Chapman, Sally

AU - Hopkins, Peter

AU - Reynolds, Paul N.

AU - Zappala, Christopher

AU - Cooper, Wendy

AU - Mahar, Annabelle

AU - Ellis, Samantha

AU - McCormack, Samuel

AU - Darbishire, William

AU - Wood-Baker, Richard

AU - Corte, Tamera J.

AU - Fuller, Joanne

AU - McAlister, Mary

AU - Stevens, Emily

AU - Symons, Karen

PY - 2014/1/1

Y1 - 2014/1/1

N2 - 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.

AB - 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.

KW - Australia

KW - Epidemiology

KW - Idiopathic pulmonary fibrosis

KW - Natural history

KW - Registry

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DO - 10.1111/resp.12358

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SP - 1088

EP - 1091

JO - Respirology

JF - Respirology

SN - 1323-7799

IS - 7

ER -

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

Abstract

Keywords

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