Dan sat down with the team to talk about his pulmonary fibrosis clinical trials research and time as the inaugural PACT Chair.
Tell us a bit about yourself and your PF clinical trials research:
I am a respiratory and transplant physician. Originally from Brisbane, and graduating from University of Queensland, I have spent time in the UK and in Perth. I originally trained in cystic fibrosis, then transplantation. I co-founded the WA lung transplant program in 2004 before moving back to Brisbane in 2008. One of the greatest honours of my career was running the world lung and heart-lung transplant Registry for 5 years. The Registry contains details of over 60,000 procedures and the reports we generated have driven significant changes in lung transplant practice globally to improve access and outcomes.
My research program focusses on mechanism and treatments for lung fibrosis. Many people are unaware that the main cause of death after lung transplantation is fibrosis of the allograft small airways and alveoli. It was researching this phenomenon (called ‘CLAD’) which then led to my major research interest in PF, as the mechanisms are very similar.
My research program is quite unconventional as it is not located in a University or a large research institute – it is located next to our clinics and operating theatres. Although this has created barriers (like lack of access to important equipment and students), it has meant that the research program is highly clinically relevant. The scientists in my program love working there as they know they are helping solve some of the greatest and most important clinical problems. It also creates a fantastic environment for other clinician researchers to start to embark on their research journeys. So, although it has been difficult at times, it has also been greatly rewarding. I am very proud of what we have achieved.
Why did you choose PF clinical trials research and how did you become the inaugural PACT Chair?
Even very early in my career I remember being concerned that there were loads of treatments available for patients with asthma, but nothing at all for patients with PF. There also seemed to be a lack of interest in developing new treatments, even though PF was killing far more of my patients than other diseases! This inequity certainly exasperated and motivated me, especially when I would see large sums of money going to research areas with no-where near the clinical need. Thankfully that has now changed, and I think the research effort and investment is far better matched to areas of clinical need.
Since PF is also a common reason to need a transplant and because of my transplant research, PF research was a natural fit for me. As a clinician I was also well placed to commence clinical trials. I recruited my first patient to a PF clinical trial in 2006, and have now established a PF clinical trial program which is one of the largest in the world.
I had the great honour to be appointed as the inaugural PACT Chair when the CRE-PF was established. I guess I was selected as I knew how to establish a successful trial program and was passionate about the opportunity, but mainly because no-one else volunteered!
What have you seen achieved in PF clinical trials during your time as PACT Chair?
The number of clinical trials has dramatically increased, and at the same time the breadth of disease targets has also expanded. I have absolutely no doubt that this broad effort will lead to highly effective new treatments. I would also say that Australia can stand proud as having led this effort to a degree far above its international weight.
What have been the biggest challenges in PF clinical trials during your time as PACT Chair?
It is a great frustration for me that there is still a large disconnect between the number patients living with PF who want to participate in clinical trials and clinical trial access. This barrier has many causes including geography, lack of information, misinformation etc. One of the main focusses of PACT is to remove these barriers and increase clinical trial access. This is important because clinical trial participation is a win, win, win – the participant may get access to a new effective treatment; they may help their friend or relative living with PF; even if the trial is negative, simply participating in a clinical trial is known to lead to better outcomes; participants get ready access to PF expert doctors, nurses and study coordinators (more about them below); and all this extra care and attention is free of charge!
Tell us a bit about the people who you have worked with in PF clinical trials and PACT:
I find it incredibly invigorating and motivating to work with passionate people – and in particular dedicated PF study coordinators. Here I would like to shout out to the study coordinators I work directly with – Sandy Bancroft, Tracie Corish, Deb Enever, Maria Pietch and many others – who are so optimistic, enthusiastic and hard working. They do it all because they care about patients with PF.
It has been a privilege to work alongside the PACT Steering Committee and our partners at Lung Foundation Australia. I would also like to personally thank Alison Hey-Cunningham and the PACT Coordinators Naomi Derrick, Shannon Cleary and Jessica Rhodes who have steered the PACT ship with me over the past 5 years!
What are you excited about for the future of PF clinical trials and PACT with incoming Chair Ian Glaspole?
Can I say not having to think of what to write for the Chair’s introduction to imPACT? 😂 On a serious note, I think there are amazing opportunities to further break down barriers to clinical trial participation through the use of new technologies, so that geographic location and lack of information will no longer prevent access to the best in PF care.
I’m also so excited to see where some of the amazing new therapeutic targets will go – I have no doubt that PF care will be transformed over the next 5-10 years as we develop new treatments targeted at genetic and other fundamental causes of PF. I also have no doubt that PACT will be leading this revolution, and sitting in the driver’s seat will be my successor Ian Glaspole – good luck Ian!