What is CF CanACT and can you provide some insight into your new position as medical lead?
CF CanACT is Cystic Fibrosis Canada’s clinical trials network which was created to help the different clinical trial sites across the country by making it easier for industry sponsored clinical trials to get off the ground. The intention was to ensure that no matter where in Canada you live, you have access to participate in clinical trials as a person living with CF, because where you live should never be a barrier.
My new position as medical lead will work in concert with CF Canada’s Chief Scientific Officer, Dr. Paul Eckford, and the Network Manager, Dr. Maggie McIlwaine, to make important decisions about the network’s direction and operational strategies. As the medical lead, I will work to also ensure the seamless integration of the network and align its priorities with our global partners, primarily in the US and Europe.
Can you talk about your previous experience that has led you to this position?
I am a pediatric respirologist and I have had a career-long interest in caring for people with CF. The time I spent in the CF clinic during my pediatric residency at SickKids in Toronto was what convinced me to go into respiratory medicine. So, I have been interested and inspired by the care that is provided for people with CF since early in my medical training.
Once I finished my pediatric respiratory medicine fellowship in Toronto in early 2016, I was lucky enough to receive a clinical fellowship from Cystic Fibrosis Canada to do further training in CF clinical care and clinical research, which I pursued for about two years.? In this role I learned more about the ins and outs of CF care but I also developed my own research program in advanced diagnostic tools for early lung disease in CF and other lung diseases.
How has Dr. Bradley Quon’s impact as previous medical lead influenced your approach and goals for the program??
Dr. Bradley Quon is a friend and a mentor with whom I have often shared thoughts on the network over the past five years. Having been involved with the program since the start, Dr. Quon has played an instrumental role in its establishment and progressive success. And while there have been many areas of notable progress, there are also aspects that need improvement and I appreciate his transparency and commitment to addressing these areas. His contribution to the development of CF CanACT has been invaluable, and I will certainly continue to lean on him for guidance moving forward.?
What do you hope to achieve in this position or what direction do you hope to see this program move in?
There are two major directions that I hope to see the program move towards achieving.
The first advancement is the need to focus on the small group of people who are ineligible for, or intolerant of Trikafta. We need to leverage the power of CF Canada and the network to know where the people who are CFTR ineligible or intolerant are and help them get involved in clinical trials if they are eligible and interested. We also need to work closely with our global partners to make sure we are moving in the same direction to ensure every study sees completion, while being as efficient and transparent as possible.
The second direction that I hope to see advancements is that people have said for a very long time that there has been this idea that CF is a disease of people of Northern European ancestry. And although it is certainly more common in this population, it's also present in the non-white populations. Historically, these non-white populations have been underrepresented in clinical research, and we are working to ensure that everyone has the same opportunity to participate in clinical research by identifying the systemic barriers across the country. The centralization of research infrastructure and training gives us a good opportunity to be able to do that. This will be a large area of focus over the next five years for the network.
What message do you have for an individual who is contemplating participating in a clinical trial? Is it safe?
My message to anyone thinking about participating in a clinical trial is thank you for thinking about contributing to clinical research in CF; we cannot do it without you! If you decide to participate: we can’t wait to work with you! If you choose not to: that is absolutely okay – participating in research isn’t for everyone.
I urge everyone with CF in Canada to visit CF CanACT trial finder to learn more about the trials that are currently underway at our sites. And if throughout the process, there is anything that the site at which you are thinking of participating can do to make it easier, please reach out to your local site or to CF CanACT. Every clinical researcher in CF recognizes the sacrifice that it takes to participate in a clinical trial and we are thankful everyday to have such a committed and engaged community. It’s this kind of collaboration that has led to such incredible advances in the care for people with cystic fibrosis.
