Reflections from the European CF Society (ECFS) conference: “the commitment of people to make a difference is so impressive”
ECFS was a whirlwind of data, expert views and connecting with people working in CF within Europe and across the globe
Clare Corbett, Director of External Affairs at the Trust
Effective treatments for all
At the forefront of minds of everyone at the conference was the urgent need to develop effective treatments for everyone with CF, particularly for those unable to benefit from modulators.
We heard updates from three companies that are testing new genetic therapies in clinical trials. In addition, early results from a new treatment called an ENaC blocker look promising, showing improvements in lung function (measured as FEV1). The latest clinical trial results of therapies for ‘splice variants’ of the CF gene were also presented at the conference.
Alongside the talks and presentations from researchers, it was an opportunity to share work the Trust is doing in this area. We presented information on our Clinical Trials Accelerator Platform (CTAP). In particular ongoing work to improve access to research for under-represented groups across the UK. Colleagues in our business development team had lots of meetings with different companies, sharing how we can support them through our CF Accelerate programme.
Improving the diagnosis and treatment of lung infections
Research into lung infections remained a big focus for many lab-based and clinical scientists at the conference. Studies are investigating how to improve the detection and diagnosis of lung infections, including how to tell if someone with CF on modulators is developing an infection and whether it’s caused by one bug or many.
The Translational Innovation Hub Network for CF Lung Health and Infection, a £15million programme co-funded by the Trust and LifeArc is addressing some of these topics and it was great to see so many early career researchers presenting their studies in progress. With researchers based across the UK and internationally in 28 institutions, the conference is a rare opportunity for scientists and clinicians within the network to meet face-to-face and discuss their progress.
A huge congratulations to Aram Kadoon for winning a poster prize for his ongoing research to develop a rapid, saliva-based test for detecting the bacteria Pseudomonas aeruginosa. Aram is a PhD student linked to the Pulse-CF Innovation Hub.
Professor Andres Floto from the University of Cambridge presented data from the ACE-CF clinical trial, using AI analysis from home monitoring devices to predict if someone is likely to be at risk of developing an exacerbation. The feasibility of such an approach was tested in the Trust-funded ‘Smartcare-CF’ study around 10 years ago.
Simplifying treatment burden
There were several presentations about the results of a UK study known as CF STORM, led by Professor Kevin Southern and Dr Gwyneth Davies. The study looked at new ways to reduce treatment burden for people with CF who were stable on modulator therapies. It was exciting to see these results presented to so many researchers and CF teams attending the conference. Look out for an opportunity to hear more about these results over the summer.
Recognising and addressing neurodiversity
There were several talks about supporting people living with CF who are neurodiverse. Psychologist Dr Sarah Carroll from Children's Health Ireland said that more people with cystic fibrosis (CF) at their clinic are being diagnosed with ADHD and autism than in the past. She also explained how CF clinics are making changes to offer better support and improve experiences when attending appointments for neurodiverse people with CF.
It was a theme that was also picked up by Aimee Stimpson from the All Wales Adult CF Service in her presentation on developing a neurodiversity care pathway. The pathway has led to tailored support for people with CF in their clinic who self-identify as being neurodiverse, without a formal diagnosis.
Sharing insights from Cystic Fibrosis Trust
In addition to hearing updates in research and care practice from universities and hospitals around the world, attending the conference was also a great opportunity to share activities underway at the Trust.
For example, Ellie, our Lead for Children and Young People gave a talk sharing the responses from young people completing the Your Life and CF youth survey.
We work hard to ensure young people have real influence in our work, so it was wonderful to see their diverse views and perspectives highlighted on an international stage.
Jacqueline Ali, Head of Information and Support at the Trust
We shared details of how our Work Forwards employment programme and our Winter Support Fund are making a difference to the lives of people with CF in the UK today. Additionally, we presented findings from our CF workforce survey to highlight how CF care is evolving in the modulator era. We hope that our evidence will inspire others to develop similar services.
It was great to meet with CF organisations across Europe (and beyond) to talk about the way in which the needs of people are changing and how that informs our work.
David Ramsden, CEO at the Trust