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

作者：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; Wood Baker Richard; Corte Tamera J^*

来源：Respirology, 2014, 19(7): 1088-1091.

DOI：10.1111/resp.12358

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

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.

• 出版日期2014-10