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A ustralian I diopathic P ulmonary F ibrosis R egistry: Vital lessons from a national prospective collaborative project
Author(s) -
Moodley Yuben,
Goh Nicole,
Glaspole Ian,
Macansh Sacha,
Walters E Haydn,
Chapman Sally,
Hopkins Peter,
Reynolds Paul N,
Zappala Christopher,
Cooper Wendy,
Mahar Annabelle,
Ellis Samantha,
McCormack Samuel,
Darbishire William,
WoodBaker Richard,
Corte Tamera J.
Publication year - 2014
Publication title -
respirology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.857
H-Index - 85
eISSN - 1440-1843
pISSN - 1323-7799
DOI - 10.1111/resp.12358
Subject(s) - medicine
There is little A ustralian epidemiologic data on idiopathic pulmonary fibrosis ( IPF ), a relatively uncommon but devastating disease. The vast geographic distances in A ustralia have been a major impediment for collaborative research into IPF . A collaborative national effort, the A ustralian IPF R egistry, has been formed, launched and is recruiting successfully ( n = 359, J anuary 2014). Our experience provides unique insights for others wishing to set up IPF registries and in time for a global IPF registry.