Idiopathic Pulmonary Fibrosis Registry

Information

What is IPF?
Idiopathic Pulmonary Fibrosis, commonly shortened to IPF, is a condition that causes persistent and progressive scarring of the tiny air sacs (alveoli) in the lungs. The Australian IPF Registry has been established by Lung Foundation Australia and is now recruiting.

Why develop an Australian IPF Registry?
High resolution computed tomography (HRCT) scanning has led to earlier diagnosis of IPF, providing physicians with the potential for early intervention of this severe and complex lung condition. As a rare lung disease no single Australian centre has an adequate patient population to facilitate robust research.

The Rare Lung Disease National Advisory Committee (previously known as PIVOT) provides over arching 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.

What benefits does the Australian IPF Registry provide?
The Australian IPF Registry provides many benefits:

  • A unique platform for epidemiological and clinical research
  • Improved recruitment into clinical trials
  • Increased IPF disease awareness and improved tertiary referral
  • Improved patient understanding and support networks
  • Improved Australian and international IPF research collaboration
  • Expert specialists provide feedback on HRCT scans and/or surgical biopsy slides.
Registry LocationAustralia
Registry ParticipationVoluntary
Registry Contact

For more information please contact Sacha Macansh (Project Manager)

T: 02 9515 3996

E: IPF@lungfoundation.com.au

Adding New Patients to Registry

How to join:
The Australian IPF Registry is currently recruiting participants in all States. Please contact Sacha Macansh (Project Manager) or the Registry Coordinator in your State.

 

Please see the website for more information

www.lungfoundation.com.au

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