This article is more than 3 years old
'Building on the new norm’ – five takeaways from the 2023 CF Clinical Trials Conference
On 3 March, the cystic fibrosis research community came together for the fifth CF Clinical Trials Conference in Wales. With the fast-changing world of CF setting the backdrop of the conference, this year was all about ‘building on the new norm’.
The conference is a rare opportunity to see how people from all corners of CF research are working together to improve the lives of people with CF.
Here are our five key takeaways from the day.
CF research is growing
One of the striking takeaways from this year’s conference was the scope of research happening in CF. The day included updates on current and developing areas of clinical trials. We also heard from people working on very different types of research, ranging from improving self-care habits to supporting people with CF with family planning decisions.
It was a poignant reflection of the changing picture of CF and the range of research that’s underway. In her talk on qualitative research, Dr Rhiannon Phillips likened different research methods to being “pieces of a jigsaw, working together to build a picture of CF”.
Making trials accessible is a priority
Increasing diversity of participants in CF clinical trials was widely discussed as a priority. A key moment of the day was Dr Jo Whitehouse’s talk, where she spoke about the diversity of people with CF in her clinic in Birmingham and presented some research from her colleague Dr Maya Desai. The study found that a higher proportion of those who are unable to benefit from CFTR modulators are from Black, Asian and minority ethnic backgrounds, compared to those who are Caucasian.
Jo’s talk highlighted the importance of the Trust’s ongoing Diversity in Clinical Trials project in supporting access to trial opportunities through our Clinical Trials Accelerator Platform.
“I really hope that CTAP can work to make trials more acceptable and accessible to people by encouraging sponsors to be aware of cultural and religious beliefs and their impact on trial participation, as well as language needs, so that health inequalities aren’t widened more.”
Deborah Haworth, Trials Accelerator Programme Business Development Manager
Genetic therapy trials are coming soon
After many years of hearing about genetic therapy as a potential treatment for CF, this year’s conference marked an exciting milestone in CF research. Dr Tim Lee and Professor Eric Alton spoke of the different genetic therapy treatments soon to be in trials and how they could offer potential for treating everyone with CF, including those who don’t benefit from CFTR modulator medicines such as Kaftrio.
“Gene therapy has long been mentioned as a potential treatment for CF, and it was really inspiring to hear from Dr Tim Lee and Professor Eric Alton about all of the genetic therapy treatments on the way in terms of clinical trials, and how different genetic therapy technologies offer potential for treating different types of CF-causing mutation,” said Loren Cameron, the Trust's Data and Projects Manager in our Trials Accelerator programme.
Dr Lucy Allen, Director of Research and Healthcare data at the Trust, talked about the Trust’s plans to launch an accessible information resource about genetic therapies in the next couple of months. Making sure we share clear information around genetic therapies and trials will be a key priority in making these trials accessible to everyone.
The value of the Registry
Most people with CF have signed up to their data being included in the UK CF Registry. It was inspiring to hear so many people talk of the unique value of the Registry and the diverse ways it can be used in CF research.
“There were lots of comments at the conference about how valuable everyone’s information within the registry is to research, to help us understand the best way to treat CF, reduce treatment burden and anticipate what it means to live longer lives with CF. We need to make the best use of this information," said Belinda Cupid, Senior Impact Adviser at the Trust.
The strengths of the CF community
We had lots of positive engagement with our Involvement workshop. It was fantastic to see people with CF and their families at the centre of research.
The standout for me is always the strengths of the wider CF community which includes all the clinicians, researchers, Trust staff and patient community. It heartens me that people and families living with CF have never been more involved and influential in the direction of progress. The atmosphere at the conference was positive and collaborative on a scale rarely seen in other areas of medicine.
Lorna Allen, Involvement Manager
This collaborative energy is what gives CF its unique strengths as a research community. It felt like a privileged time to be in the room with people from all corners of CF research talking about the different ways we are ‘building on the new norm’.
Throughout the day there was an overwhelming sense of the years of collaborative efforts that have led up to this point. We are excited to see where these efforts will lead us by next year’s conference.
Find out more about cystic fibrosis clinical trials and the Clinical Trials Accelerator Platform. You can also find a list of current trials on the Trials Tracker.
It's thanks to our incredible supporters that we can continue to be at the cutting edge of CF research. Making breakthroughs and discoveries that change lives for the better. Now and in the future. But we know this is just the start. Incredible progress has been made, but there is still a long way to go until everyone with CF can truly live a life unlimited. We won’t stop until we can all lead the lives we want. Until cystic fibrosis stops challenging, damaging or shortening lives. And you can be part of it.
Donate today and help us unite for a life unlimited.
Our newsletter
Get the latest on what the Trust and our supporters are doing straight to your inbox.