
New IPF Registry research
A recent study published by the European Respiratory Journal based on the Australian Idiopathic Pulmonary Fibrosis (IPF) Registry data looked at the frequency of prolonged…
Our Australian Idiopathic Pulmonary Fibrosis (IPF) Registry is a unique research platform that collects information on patients living with IPF to better understand this rare and complex disease. To improve our understanding, participants generously contribute information about their health regularly so that it can be used to undertake a wide range of research projects. The Registry provides a central source of rich data that is being used in both national and international studies. The information collected by the registry is used to address many different research questions across epidemiology, medical and clinical trial research. The Registry provides many benefits including:
The Rare Lung Disease National Advisory Committee (previously known as PIVOT) provides overarching governance to the Registry. A global network has been established with support from the Royal Brompton Hospital in the UK and the University of California, San Francisco in the USA. Registry data sets have been designed specifically to complement and build on the experience and expertise of these recognised international centres. The work of the Australian IPF Registry has been made possible through the generous support of a number of philanthropic families and the Royal Hobart Hospital Research Foundation. Financial support for the Australian IPF Registry is also proudly provided in the form of an unrestricted educational grant.
Foundation sponsor
Supporting partner:
Lung Foundation Australia gratefully acknowledges the in-kind support of:
Lung Foundation Australia also gratefully acknowledges the contribution of the members of the Registry of Radiology and Histopathology review panels.
BMC Pulmonary Medicine (2018), Disease progression in idiopathic pulmonary fibrosis with mild physiological impairment: analysis from the Australian IPF Registry.
European Respiratory Journal (2017), Determinants and outcomes of prolonged anxiety and depression in idiopathic pulmonary fibrosis.
Respirology (2017), Health-related quality of life in idiopathic pulmonary fibrosis: Data from the Australian IPF Registry.
European Respiratory Journal (2017) 49 1601592, Baseline characteristics of idiopathic pulmonary fibrosis: analysis from the Australian Idiopathic Pulmonary Fibrosis Registry: