May 1, 2015

Australian Idiopathic Pulmonary Fibrosis (IPF) Registry

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

Researchers are finding the Australian IPF Registry a valuable source of information about Idiopathic Pulmonary Fibrosis (IPF). Thanks to the contributions of more than 600 patients with IPF now participating in the Registry, and their respiratory physicians, researchers have the opportunity to learn more about this challenging disease. Research on the Registry has recently been presented and discussed at important national and international forums, including the Thoracic Society of Australia and New Zealand (TSANZ) and the American Thoracic Society Annual Scientific Meetings. Thanks to those generously participating in the Registry, researchers have the chance
to understand more about IPF.

In the coming months, the Lung Foundation will be exploring ways to enhance our support of those with IPF, including developing new patient material and introducing a new pilot peer support program for those living with IPF. We will be contacting Registry participants and offering them the opportunity to participate in the pilot of this program. We look forward to expanding the program more widely as soon as possible and will keep our LungNet News readers informed of our progress.

If you have IPF you too can help, please ask your respiratory physician about the Registry during your
next visit. Healthcare providers, 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, ipf@lungfoundation.com.au or visit the Lung Foundation website www.lungfoundation.com.au/health-professionals/idiopathic-pulmonary-fibrosis-registry.

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 drug trials. A number of clinical trials are currently being or have recently been undertaken in Australia. See the previous edition of LungNet news or call our Information and Support Centre on 1800 654 301 for details. In addition, Bristol-Myers Squibb has Phase II clinical trial in recruitment (NCT01766817 (IM136003)).

For further information on these trials, please speak to your respiratory physician.