Idiopathic Pulmonary Fibrosis (IPF)
- Shortness of breath on exertion – particularly noticeable when walking up hills or stairs
- Cough (generally dry)
- Fingernails and toenails change to a beak shape, known as clubbing
Being part of a peer support group offers people impacted by IPF the unique opportunity to:
- Share experiences and knowledge
- Connect with other people who understand what you are going through
- Offer support to one another over the phone
- Access general support and information
To be referred to the Pulmonary Fibrosis Peer Support please contact our Information and Support Centre on 1800 654 301 or email firstname.lastname@example.org
You can download our IPF factsheet here:
The information collected by the registry may potentially be used to address many different research questions across epidemiology, medical and drug trial research.
The Australian IPF Registry provides many benefits including:
- 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.
Clinical trials for IPF medications in Australia
A number of clinical trials in IPF are currently being or have recently been undertaken in Australia. The future of IPF therapy rests with well-designed clinical trials to evaluate the ability of new therapies to stop or reverse existing lung scarring. It is recommended to discuss the possibility of taking part in a clinical trial with your specialist. A list of the clinical trials which are being conducted.
|Study||Therapeutic agent||Company||Trial Phase||Progress|
|BI 11.99.36*||Sildenafil (*Nintedanib)||Boehringer Ingelheim||Phase IIIb||Recruiting now|
|BI 1199.227||Nintedanib||Boehringer Ingelheim||Phase IV||Recruitment complete|
|Lebrikizumab||Roche||Phase II||Recruitment complete|
|SAR156597||Sanofi||Phase II||Recruitment complete|
|BMS-986020||Bristol-Myers Squibb||Phase II||Recruitment complete|
|NCT02510937||CC-90001||Celgene||Phase I||Recruitment complete|
|* Background antifibrotic medication allowed.|
Table 1. Clinical trials for potential IPF medications in Australia
For further information on these trials please speak to your respiratory physician.
If you have Idiopathic Pulmonary Fibrosis you too can help, please ask your respiratory physician about the Registry during your next visit.
Health care providers please contact the Registry Coordinator in your State to inform them of your IPF patients who are interested in joining the Registry.
|NSW & ACT||Robert Henson||02 9515 4018||Email Robert|
|QLD||Sacha Macansh||02 9515 3996||Email Sacha|
|SA||Alysha Riley||08 8222 4244||Email Alysha|
|TAS||Heather Chaplin||03 6226 4790||Email Heather|
|VIC||Karen Symons||03 9076 6963||Email Karen|
|WA||Sacha Macansh||02 9515 3996||Email Sacha|
|NT||Sacha Macansh||02 9515 3996||Email Sacha|
- Australian IPF Registry
- Pulmonary Fibrosis Foundation (US)
- Coalition for Pulmonary Fibrosis (US)