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…
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After 10 years of successful operation, the Australian Idiopathic Pulmonary Fibrosis (IPF) Registry was finalised in 2022. This rich research platform supported a wide range of projects, with peer reviewed publications across epidemiology, prognostic indicators including biomarkers and artificial intelligence using HRCT scans, health economics, and genetic studies. The research using AIPFR data has contributed to an improved understanding of the complex disease IPF and thereby improved management and outcomes for people living with IPF.
This unique research platform including extensive data, HRCT scans and blood samples, continues to be available for research and under management of the AILDR team. To learn more or to investigate access to Australian IPF Registry data for research visit the website by clicking on the button below.
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Acknowledgements
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.
The Australian IPF Registry is supported by
Foundation sponsor
Supporting partner:
- Biogen
Lung Foundation Australia gratefully acknowledges the in-kind support of:
- Alfred Medical Imaging, NSW
- Alfred Health, Melbourne, Victoria
- Central Adelaide Local Health Network Inc. Royal Adelaide Hospital
- Hunter Medical Research Institute and John Hunter Hospital
- Institute for Respiratory Health, WA
- Metro North Hospital and Health Services
- Royal Prince Alfred Hospital, Camperdown NSW
- University of Tasmania, Hobart, TAS.
Lung Foundation Australia also gratefully acknowledges the contribution of the members of the Registry of Radiology and Histopathology review panels.
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Helpful links
BMC Pulmonary Medicine (2018)
BMC Pulmonary Medicine (2018), Disease progression in idiopathic pulmonary fibrosis with mild physiological impairment: analysis from the Australian IPF Registry.
European Respiratory Journal (2017)
European Respiratory Journal (2017), Determinants and outcomes of prolonged anxiety and depression in idiopathic pulmonary fibrosis.
Respirology (2017)
Respirology (2017), Health-related quality of life in idiopathic pulmonary fibrosis: Data from the Australian IPF Registry.
European Respiratory Journal (2017)
European Respiratory Journal (2017) 49 1601592, Baseline characteristics of idiopathic pulmonary fibrosis: analysis from the Australian Idiopathic Pulmonary Fibrosis Registry: