August 1, 2015

Australian Idiopathic Pulmonary Fibrosis (IPF) Registry

Sacha Macansh, Project Manager, Australian IPF Registry, Lung Foundation Australia


Thanks to the generous contributions by more than 600 patients with IPF now participating from every State and Territory, the Australian IPF Registry is being recognised as a world leader. Representatives of the Australian Registry recently attended an international meeting of IPF registries. The Australian Registry was one of eight registries representing 11 different countries. The meeting looked at ways we can work together to ensure we maximise the opportunities to learn more about this challenging disease and make the most of these valuable registry assets you have helped create.

If you have Idiopathic Pulmonary Fibrosis you too can help. Please ask your respiratory physician about the Registry during your next visit. Health professionals please contact the Registry Coordinator in your State to inform them of your IPF patients who are interested in joining the Registry. To find the Coordinator in your State please see the table to the right.

For further information please call Sacha Macansh on 02 9515 3996, email or visit the Lung Foundation website

Clinical trials for IPF medications in Australia

Apart from creating a unique research platform the Australian IPF Registry also aims to improve recruitment to clinical trials for potential new medicines. A number of clinical trials in IPF are currently being or have recently been undertaken in Australia.

IPF Registry tables - Aug LungNet