August 11, 2014

Australian Idiopathic Pulmonary Fibrosis (IPF) Registry

IPF Registry Leaf Logo 111125

New Hope for People with IPF

Lung Foundation Australia welcomed the findings of two major studies released at the American Thoracic Society 2014 Congress in San Diego in April, which showed IPF could be successfully treated with new medicines that slow disease progression by “blocking the signalling pathways” that cause the scarring of lung tissue.

The INPULSIS trials, which involved 1,066 patients worldwide, including 33 Australians, found that patients who received nintedanib for one year experienced a 50% reduction in the decline in lung function compared to those receiving placebo.

Similarly, the ASCEND study demonstrated that patients who received pirfenidone for one year experienced a 48% reduction in disease progression or death compared to those taking placebo.

More than 90% of patients who participated in the INPULSIS and ASCEND studies have opted to continue with the new therapies as part of on-going trials. The two new therapies are likely to be available in Australia in the coming months. These exciting results will already be changing the lives of IPF patients globally.

If you have Idiopathic Pulmonary Fibrosis, and would like further information, talk to your treating physician. You may also wish to talk to them about joining the Australian IPF Registry. Facilitated by Lung Foundation Australia, the Registry aims to enrol all Australians with IPF so that the data collected can help researchers learn more about the condition.

Health care providers, for further information on these important studies you may wish to join the Australian IPF Registry special interest group, AUS IPF-net. The latest edition of the AUS IPF-net e-newsletter profiles this important information and other IPF related topics presented at the American Thoracic Society meeting. To join please call Sacha Macansh on 02 9515 3996 or email ipf@lungfoundation.com.au.

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 call Sacha Macansh on 02 9515 3996, email ipf@lungfoundation.com.au or visit the Lung Foundation website http://lungfoundation.com.au/health-professionals/idiopathic-pulmonary-fibrosis-registry/