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imPACT – July 2021

Message from the Chair

Welcome to your quarterly imPACT. There has been a surge in clinical trial activity in Australia and New Zealand over the past few months as our COVID-19 response has meant we remain well and truly open for business when it comes to clinical trials. This means that we are a very attractive destination for global companies wishing to develop their innovative products, and is reflected in the increase in listings you will see on the PACT website. This is great news for Aussies and Kiwis with Pulmonary Fibrosis (PF).

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I know many of you have joined us for our joint TSANZ/PACT webinar series which has included: ‘ATS recap – What’s the latest in pulmonary fibrosis clinical research?’ by Ian Glaspole, ‘New drugs for pulmonary fibrosis – are there any blockbusters around the corner?’ with Glen Westall and myself, and a consumer focussed webinar on ‘Understanding Pulmonary Fibrosis clinical trials’ featuring myself and one of my patients Kevin who generously gave up his time. The webinars are now available to view on demand via our website. Make sure you visit the site for upcoming webinar opportunities.

Finally, I want to draw your attention to a potentially exciting development in Australian clinical trials. The Australian Commission on Quality and Safety in Healthcare is planning a ‘National One-Stop-Shop’ for clinical trial activity. This ambitious project is planning to breakdown the red tape which slows trial establishment and recruitment by “creating a national, interconnected, rapid and streamlined approvals platform that will:

  • include a cross-jurisdictional ethics and governance approvals platform that incorporates key application, notification and approval systems;
  • incorporate the Clinical Trials Notification and Clinical Trials Approval schemes administered by the Therapeutic Goods Administration’;
  • include an embedded and automated next-generation national clinical trials registry; and
  • provide sophisticated monitoring and reporting functionality for different users.”

Consultation will be open soon – either let me know your thoughts about the initiative or register your interest, here. Our clinical trial partner the Australian Clinical Trials Alliance has committed to advocate for the sector, aiming to provide a coordinated response that represents investigator-initiated trials.

On behalf of the PACT team and the CRE-PF, we hope you enjoy this quarter’s imPACT!

Professor Dan Chambers
PACT Chair

Message from the CRE-PF

2021 continues to be a busy and productive year for the CRE-PF. There is much to celebrate as we progress our strategic plan for the future of PF research in Australia. In this issue of imPACT, I would like to focus on recent exciting developments with the Australasian Interstitial Lung Disease Registry (AILDR). You may be familiar with the Australian Idiopathic Pulmonary Fibrosis Registry (AIPFR) – now an internationally recognised registry, established in 2012 in collaboration with the Lung Foundation Australia. Not to be confused with the AIPFR, the AILDR, which includes patients with all types of interstitial lung diseases, was established in 2016.

The AILDR initially completed a pilot phase at four sites, and has since grown to more than 20 sites across Australia and NZ with approximately 2000 patients.

In the next phase of AILDR development, we continue to expand site and patient numbers and are building a cutting-edge automated registry model, including links to a biobank of high resolution CT scans and other lung biospecimen. One of the great strides this year sees AILDR collaborating with an Australian software development company to design and develop an innovative, customised ILD smartphone app which will link with the AILDR, collecting patient-entered data. The REgistry for Better Understanding of ILD (RE-BUILD) app has the potential to transform the way ILD patients share and monitor their health information, interact with researchers, and access educational resources.

The app prototype is about to commence real user testing at three ILD research centres in NSW and Victoria (Royal Prince Alfred Hospital, Austin Health, and The Alfred Hospital). In future, the scalable design will be available for adoption across all Australasian ILD Registry sites in Australia and New Zealand and to patients living rurally or remotely who are not close to ILD centres.

I look forward to sharing more about the app and other exciting AILDR initiatives as we progress further.

Yours sincerely,

A/Prof Tamera Corte


Trials update

There are more PF trials currently underway in Australasia than ever before!

In the first half of this year alone, PACT has welcomed trial listings for Algernon Pharmaceuticals AGN120-1, FibroGen Zephyrus, investigator-led TELO-SCOPE, Bristol-Myers Squibb BMS-986278, Galecto GALACTIC-1 and Roche WA42293.

See the Find a Trial page for information about current trials. 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 to the relevant trial centre.


The second annual PACT Grant-in-Aid for Investigator Led Pulmonary Fibrosis Clinical Research has been awarded to Dr Yet Hong Khor for Understanding overnight oximetry in fibrotic interstitial lung disease. Congratulations, Yet! Read more about Yet’s Pulmonary Fibrosis research career and this project in Five Minutes a Pulmonary Fibrosis Researcher feature below.

Current grant opportunities relevant to PF clinical research and trials include:

  • MRFF Rare Cancers, Rare Diseases and Unmet Need– To improve the health and wellbeing of Australians by supporting new, high-quality clinical trials research into rare cancers, rare diseases and areas on unmet medical need. Closing 18 August 2021.
  • NHMRC Clinical Trials and Cohort Studies Grants– Support high-quality clinical trials and cohort studies that address important gaps in knowledge, leading to relevant and implementable findings for the benefit of human health. Closing 25 August 2021.
  • NSW Health Translational Research Grants – For staff employed within the NSW public health system. To build research capacity and accelerate the translation of evidence into better patient outcomes, health service delivery and population health and wellbeing. EOI closing 6 September 2021.
  • NHMRC Partnership Projects– Support connections, within the Australian context, that translate research evidence into health policy and health practice, to improve health services and processes. Closing 1 December 2021.

Upcoming Events of Interest

Australasian Rare Lung Disease Conference (ARLDC21)

The ARLDC21 will be a hybrid format event 6-7 August. Lung Foundation Australia, TSANZ, and the CRE-PF are delighted to invite you to this year’s innovative program, with in-person conference hubs in Sydney and Melbourne, plus live-streaming accessible internationally for registered guests.

For the first time in the ARLDC’s decade-long history, content will be available on-demand for a period of time post-event. The program includes clinical, radiology and scientific plenary sessions, as well as abstract presentations. Visit the websiteto learn more and register today.

A Primary Care Foundations Course and two patient education sessions will be offered post-conference to complement the main program.

Register here for the free Consumer Program to gain access to the virtual platform and poster gallery on the registered session days. Registration for the Primary Care Foundations Course will open soon.

Health Professional webinars

Our PACT PF webinar series for health professionals in collaboration with TSANZ and the CRE-PF continues. The first two webinars are now available to watch on demand now. Stay tuned for information about our next health professional webinar in the upcoming months.

Virtual PF research meetings

The CRE-PF CREATE monthly Australasian Pulmonary Fibrosis Virtual Research Meetings promoting collaboration and discussion amongst researchers interested in PF continue throughout 2021. Contact Kate Christian on to find out more about the program and how to join.

Five Minutes with a Pulmonary Fibrosis Researcher Dr Yet Khor, Alfred Health, Melbourne

Dr Yet Khor sat down with the PACT team to talk about her project Understanding overnight oximetry in fibrotic interstitial lung disease, including how it started and what the support of the PACT Grant-in-Aid will mean for this research.

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The PACT network welcomes new members across all aspects of PF research, care and life with the condition.

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