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",

publisher = "John Wiley and Sons Inc",

number = "7",

}

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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