“It was incredible to see the ‘army’ of people around the world working tirelessly for the CF community”: Reflections on the European CF Conference

Research for those not able to benefit from modulators

There were many presentations on new ways to treat CF that could benefit people who do not have access to Kaftrio or similar medicines. 

These ranged from explainers and updates on the latest genetic therapies for people with CF, to therapies that could specifically target people with rare CF mutations. The latest research into treatments for two types of rare CF mutations: ‘stop’ mutations (eg W1282X) and  ‘splicing’ mutations (eg 3849+10kb C>T), were talked about. There was also a chance to hear detailed information about how the CF protein is damaged in CF and what this means for designing new medicines in the future.

Research grants funded by the Trust are supporting lab-based research to develop better treatments for CF, and some of these are currently being tested in clinical trials in the UK. Find out more about genetic therapy clinical trials in our Trials Tracker.

Keeping mentally well

The mental well being of people with CF was a hot topic at the conference. This included increasing recognition of mental health symptoms such as anxiety, depression and sleep disturbance that people with CF experience. Talks gave advice to CF teams on how to manage these symptoms. Presenters talked about how important it is to consider the mental wellbeing of family members of people with CF as well as people with CF themselves. We also heard presentations about how to support neurodiverse people with CF.

Support is available if you’re concerned about your own mental health, or that of someone you care for. Your CF team may have a psychologist or social worker you can talk to, or you could also request an appointment with your GP. No-one will judge you for seeking support.

Being physically well

Updates on research into how to better diagnose, monitor and treat flare ups of poor lung health known as exacerbations were one highlight of the talks on the physical symptoms of CF. On CF diabetes there were talks on support for CF teams to better manage CF diabetes and the results of studies to increase our understanding of the causes of it. 

There were also a number of talks on gastrointestinal (GI) (gut) symptoms. Presenters highlighted the need for better ways to screen for and monitor gut symptoms of CF. “We want to find the ‘FEV1-equivalent’ for intestinal outcomes” was a comment from one presenter. To address this, another research group told delegates about new version of the ‘CFAbd’ assessment tool for children to report on their own gut symptoms of CF (rather than an assessment being completed by their parents or the CF team). A later talk on the results of the RECOVER study highlighted the improvements seen in GI symptoms in adults with CF on Kaftrio for up to two years. 

Addressing inequities

A very stark illustration of inequities of care for people living with CF in low to middle income countries was given by South Africa-based Dr Marco Zampoli in his closing talk of the conference. He shared some of the challenges in diagnosing and treating CF, raising topics such as the lack of equipment, expertise, access to effective medicines, and the effects of existing conditions on health of people with CF, including HIV infection (making them more susceptible to lung infections). 

Coordinated by ECFS and CF Europe, 30 CF centres across Europe are taking part in a twinning scheme, where CF centres with more resources can support those with less. The conference was a great opportunity for some of the twinned centres to meet. CF Teams in Cardiff, Cambridge, Leeds, London, Manchester and Southampton in the UK are supporting CF teams in Estonia, North Macedonia, Turkey, Greece, Ukraine and Slovakia.

Our role in accelerating research

Across the conference and linked events, we can all be proud of the impact of Cystic Fibrosis Trust. It was fantastic to see posters showcasing our information and support resources, the work of the Quality Improvement and UK CF Registry teams, and so many mentions of UK CF Registry data and acknowledgments of Trust-funded research.

Our exhibition stand was constantly busy with clinicians, CF team members and researchers dropping in to catch up with us. It was also an opportunity to promote new and updated resources such as our ‘CTAP impact report’, our UK CF Registry 2023 Highlights data report and updated CTAP sponsor brochure.

“Our resources were praised on numerous occasions, especially from international teams who use our work as an exemplar for things they wish to produce,” commented Claire who helped staff the stand.

With support from LifeArc, we held an industry symposium for the first time, demonstrating how the Trust provides support for researchers in biotech and biopharmaceutical companies - from their laboratory research, right through to monitoring the effectiveness of new medicines after they’ve been approved for use. Find out more by watching our new animation.

Uniting for a life unlimited by CF

Many presenters talked about the importance of involving people with CF at every stage of research. We heard recorded insights from Katie who shared her thoughts on growing older with CF at the busiest talk of the conference - the opening address. Many other talks also included quotes and comments from the CF community around Europe and internationally.

We also took the opportunity to share the excitement of the conference, as well as updates on some of the Trust’s wider activities, at an in person and online hybrid evening event for the CF community near the conference venue in Glasgow. Local supporters heard from Dundee-based CF researchers Dr Dan Neill and PhD student Tom Brogan on their research to accelerate the development of new antimicrobials. These are studies that are funded through our PIPE-CF Strategic Research Centre. We also shared an update on our Homestart project in Glasgow and explained how anyone from the CF community can get involved in shaping and designing CF research studies.  

If you’d be interested in sharing your thoughts on how to shape CF research in the future, please get in touch with our involvement team.