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

被引：34

作者：

Moodley, Yuben ^{[1
]}

Goh, Nicole ^{[2
]}

Glaspole, Ian ^{[2
]}

Macansh, Sacha ^{[3
]}

Walters, E. Haydn ^{[4
]}

Chapman, Sally ^{[5
]}

Hopkins, Peter ^{[6
]}

Reynolds, Paul N. ^{[5
]}

Zappala, Christopher ^{[7
]}

Cooper, Wendy ^{[8
,9
,10
]}

Mahar, Annabelle ^{[8
,9
]}

Ellis, Samantha ^{[2
]}

McCormack, Samuel ^{[11
]}

Darbishire, William ^{[3
]}

Wood-Baker, Richard ^{[4
]}

Corte, Tamera J. ^{[9
,12
]}

机构：

[1] Univ Western Australia, Royal Perth Hosp, Perth, WA 6009, Australia

[2] Alfred Hosp, Dept Resp Med, Melbourne, Vic, Australia

[3] Lung Fdn Australia, Brisbane, Qld, Australia

[4] Univ Tasmania, Dept Med, Hobart, Tas, Australia

[5] Royal Adelaide Hosp, Adelaide, SA 5000, Australia

[6] Prince Charles Hosp, Brisbane, Qld 4032, Australia

[7] Royal Brisbane & Womens Hosp, Brisbane, Qld, Australia

[8] Royal Prince Alfred Hosp, Sydney, NSW, Australia

[9] Univ Sydney, Sydney Med Sch, Sydney, NSW 2006, Australia

[10] Univ Western Sydney, Sch Med, Sydney, NSW, Australia

[11] Royal Prince Alfred Hosp, Dept Radiol, Sydney, NSW, Australia

[12] Royal Prince Alfred Hosp, Dept Resp Med, Sydney, NSW, Australia

来源：

RESPIROLOGY | 2014年 / 19卷 / 07期

关键词：

Australia; epidemiology; idiopathic pulmonary fibrosis; natural history; registry;

D O I：

10.1111/resp.12358

中图分类号：

R56 [呼吸系及胸部疾病];

学科分类号：

摘要：

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.

引用

页码：1088 / 1091

页数：4

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