imPACT: September 2022
Message from the Chair
Message from the Chair
Welcome to imPACT’s Pulmonary Fibrosis Awareness Month issue.
September is the month to ensure our voices, and the voices of our patients living with Pulmonary Fibrosis, are heard. Despite significant advances over the past decade, Pulmonary Fibrosis remains a lethal disease with a prognosis no better than many cancers. It is particularly troubling to know that this mortality, and the morbidity and loss of quality of life attributable to Pulmonary Fibrosis, would be significantly reduced with a more concerted, coordinated research effort linked to effective implementation of new knowledge. As with other less common diseases, and particularly those with poor prognoses and hence fewer advocates, it is our responsibility to ensure we shine a spotlight on pulmonary fibrosis, particularly in September.
One of the most important initiatives of the recent past, which has supported Australians and New Zealanders with pulmonary fibrosis and ensured just such a concerted and coordinated research effort, has been the Centre for Research Excellence in Pulmonary Fibrosis, led by Professor Tam Corte. I am delighted to be able to announce that the next iteration of the CRE, this time focussing on all ILDs, has been selected for funding in a highly competitive field. This is a wonderful achievement and fantastic news for researchers, educators, clinicians and patients and their carers. Congratulations to Tam and the team! You can find out more about the CRE in this issue.
Stay healthy and safe,
Professor Dan Chambers
PACT Chair
Message from the CRE-PF
I am thrilled to share that our Australian team of world-leaders in pulmonary fibrosis research have recently been awarded $2.5m by the Australian National Health and Medical Research Council toward a second Centre of Research Excellence (CRE).
Combined with generous support from an Australian philanthropic family, this will transform PF research in Australia over the next five years and ensure longevity of the national infrastructure we have established to support PF, including PACT.
The goal of the CRE is to improve health outcomes for people living with PF and to promote and translate PF research into policy and practice; developing more effective, personalised approaches to diagnosis and management.
The newly funded CRE allows us to continue building on the work of the Centre of Research Excellence in Pulmonary Fibrosis (2017-2023). Congratulations to Prof Anne Holland, Prof Dan Chambers, Prof Phil Hansbro, Prof Jo Dickinson, Prof Andrew Palmer, Prof Yuben Moodley, Prof Joseph Powell, A/Prof Luke Knibbs, A/Prof Natasha Smallwood and the whole team!
Also in this issue, I would like to celebrate the fantastic success of the Australian Idiopathic Pulmonary Fibrosis Registry (AIPFR). As you will read about below, the AIPFR has recently been finalised as we move to a new focus across the spectrum of interstitial lung diseases (ILD) in the Australasian ILD Registry. The achievements of the AIPFR have been due in no small part to the expert management of Sacha Macansh, who has been with the AIPFR since its inception. On behalf of the AIPFR Steering Committee, I would like to thank Sacha for her service and friendship through the last decade.
Yours sincerely,
Professor Tamera Corte (CIA for CRE-PF)
Trials Update
2022 has certainly been a fast-paced year with accelerated recruitment for PF trials resulting in a number reaching enrolment capacity recently, including BMS IM027-040 and GALACTIC. Roche STARSCAPE WA42293 is following closely behind with the trial expecting to close recruitment in November 2022. Australia is one of the highest recruiting countries for this study. We look forward to seeing the results of these studies and potentially new PF treatments becoming available.
With some trials closing many more are opening and offering patients access to brand new treatments. We are excited to announce the recent PACT website listing of two new trials, Syndax Pharmaceuticals and Endeavour ENV-101.
Endeavor Biomedicines ENV-101 trial is evaluating the safety and efficacy of the Taladegib medication in idiopathic pulmonary fibrosis (IPF). Recruitment is currently in progress at numerous sites across Victoria, NSW and Queensland. Syndax Pharmaceuticals trial is evaluating an intravenous medication Axatilimab in IPF patients, starting up at a Queensland site with recruitment expected to commence soon.
Four national investigator led studies for patients with pulmonary fibrosis continue in Australia: TELO-SCOPE, PFOX, HIIT and GRIPF. Information about current trials is available on the Find a Trial page of our website. If you are a patient interested in participating in a trial, we encourage you to talk to your treating healthcare team about getting a referral and finding out what is happening at the relevant trial centre.
Australian Idiopathic Pulmonary Fibrosis Registry finalised – where to now?
After 10 years of successful operation, Australian Idiopathic Pulmonary Fibrosis Registry (AIPFR) has been finalised. Data collected from 867 generous participants living with IPF will continue to be available for research, including HRCT scans and blood samples. Success of the AIPFR has relied on collaboration of Respiratory physicians around Australia. Thank you.
The regular and ongoing research outputs using AIPFR data demonstrate of the enduring value of this cohort. Since established the AIPFR cohort has been the basis of:
- 22 papers published in peer reviewed journals
- 69 abstracts accepted for oral and poster presentation at Australian and International conferences (not including State and local meetings)
- 6 research grants including the Centre of Research Excellence in Pulmonary Fibrosis (CRE-PF) and 3 NHMRC grants.
The depth of this rich research platform supports a wide range of projects, with publications across epidemiology, IPF prognostic indicators using biomarkers and AI of HRCT scans, health economics, and genetics.
This research has contributed to our increased understanding of this complex disease and so ultimately to the improved management and outcomes of IPF patients, a foundation goal of the AIPFR.
Emphasis now turns to the Australasian Interstitial Lung Disease Registry (AILDR). Across more than 21 sites in Australia and New Zealand this broader focus also aims to facilitate research. With more than 2,600 Registry participants, data collection efficiency is being enhanced with the RE-BuILD App. This digital mobile phone Application will pilot participant entry of clinical information, outcome measures and access to information and support.
To learn more and/or to investigate access to AIPFR and/or AILDR data for research visit the AILDR webpage.
Sacha Macansh,
Australian IPF Registry Manager
Grants
Current grant opportunities relevant to PF clinical research and trials include:
- MRFF 2022 International Clinical Trial Collaborations Grant – support clinical trials in Australia in collaboration with international counterparts to: give patients across Australia more access to clinical trials; show which treatments and medicines work best for patients; provide researchers with more opportunities to work with international colleagues to bring international trials to Australian patients; and promote new approaches that support efficient and effective research. Closing 22 February 2023.
- Lung Foundation Australia has a range of PF research grants opening soon. Keep an eye out on the Lung Foundation Australia website over the next few weeks for more information on how you can apply.
Upcoming Events of Interest
Health professional webinar
The final TSANZ-PACT webinar for 2022 will be “Accelerating translational research to find cure for IPF: Can we REMAP-ILD” presented by Prof Gisli Jenkins. Stay tuned to the TSANZ events page for full information about this upcoming webinar.
Consumer webinar
In honour of PF awareness month, Lung Foundation Australia and the CRE-PF are pleased to present the Living with PF: Lived Experience Panel. Our patient panel will share their learnings, and stories of their journey with PF, from diagnosis and treatment, through to the pre and post lung transplant journey. Learn more and register here.
ICLAF
The 21st International Colloquium on Lunag and Airway Fibrosis (ICLAF) is taking place October 1-5 in Reykjavik, Iceland. There’s still time to register for online attendance, find out more here.
Virtual PF research meetings
The next CRE-PF CREATE Australasian Pulmonary Fibrosis Virtual Research Meeting will feature Dr Matthew Parker from the University of Sydney speaking about connective tissue disease related interstitial lung disease. Contact Kate Christian on create@cre-pf.org.au to find out more about the program and how to join.
