Australian Idiopathic Pulmonary Fibrosis Registry : vital lessons from a national prospective collaborative project

Yuben Moodley; Nicole Goh; Ian Glaspole; Sacha Macansh; Haydn Haydn Walters E.; 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

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, Haydn Haydn Walters E., 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

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

33 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 - 2014

Keywords

Australia
IPF Registry
epidemiology
idiopathic pulmonary fibrosis

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10.1111/resp.12358

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Moodley, Y., Goh, N., Glaspole, I., Macansh, S., Haydn 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. (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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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.",

keywords = "Australia, IPF Registry, epidemiology, idiopathic pulmonary fibrosis",

author = "Yuben Moodley and Nicole Goh and Ian Glaspole and Sacha Macansh and {Haydn 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.}",

year = "2014",

doi = "10.1111/resp.12358",

language = "English",

volume = "19",

pages = "1088--1091",

journal = "Respirology",

issn = "1323-7799",

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Moodley, Y, Goh, N, Glaspole, I, Macansh, S, Haydn Walters E., H, Chapman, S, Hopkins, P, Reynolds, PN, Zappala, C, Cooper, W, Mahar, A, Ellis, S, Mccormack, S, Darbishire, W, Wood-Baker, R & 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

TY - JOUR

T1 - Australian Idiopathic Pulmonary Fibrosis Registry : vital lessons from a national prospective collaborative project

AU - Moodley, Yuben

AU - Goh, Nicole

AU - Glaspole, Ian

AU - Macansh, Sacha

AU - Haydn 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.

PY - 2014

Y1 - 2014

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 - IPF Registry

KW - epidemiology

KW - idiopathic pulmonary fibrosis

UR - http://handle.uws.edu.au:8081/1959.7/uws:29281

U2 - 10.1111/resp.12358

DO - 10.1111/resp.12358

M3 - Article

SN - 1323-7799

VL - 19

SP - 1088

EP - 1091

JO - Respirology

JF - Respirology

IS - 7

ER -

Australian Idiopathic Pulmonary Fibrosis Registry : vital lessons from a national prospective collaborative project

Abstract

Keywords

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