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Conference round up: From germs and genes to gynaecology!
There was a terrific attendance which shows just how much academic and clinical focus there is on CF. There was a real mood of step by step progress. And yet so much more needs to be achieved. It was an inspiring event with so many opportunities for networking
Richard Hunt, Chair of Trustees, Cystic Fibrosis Trust
Delivering meaningful clinical trials
An important part of our research support offer is talking to companies about how we can support them to run their trials in the UK. Being at the conference was a great opportunity to meet company representatives in person.
“We met with companies every day of the conference – and excitingly some of them for the first time! Its been our best ECFS conference since I started working at the Trust a couple of years ago. I came home with lots of actions to follow up on,” said Deb Haworth, Business Development Manager at the Trust.
“Highlights of the conference for me were meeting with the companies who are either currently setting up or who are considering running their CF trials in the UK. There were good opportunities for us to further promote our Clinical Trials Accelerator Platform (CTAP) and the UK as a whole” said Becca Brendell, Head of CTAP at the Trust. “It was also a great chance to meet other CF patient organisations from around the world, and sharing, for example, how people in the CF community in the UK are involved in every stage of clinical trials, from helping with their design to taking part.”
Who can take part in clinical trials?
All trials have rules on who can take part, known as eligibility criteria. Agreeing who should be included is an important part of planning a clinical trial.
It is always a difficult balance to strike, particularly when designing trials of medicines that may work for people unable to benefit from modulators. Researchers want to keep people with CF in poorer health as safe as possible, but at the same time those in poorer health may benefit most from the new medicines being tested. New ways of how to address this balance were discussed at the European Clinical Trials Network meeting that took place at the conference.
So much progress is being made, however, the conference also made clear that there is so much more to do, particularly for those who can’t access the latest treatments due to geography or genetics.
David Ramsden, Chief Executive, Cystic Fibrosis Trust
Improving CF care
Talking about sexual and reproductive health was one of the themes of the conference. From starting conversations with young people, to gathering evidence on keeping mothers with CF and their children in the best health, to encouraging CF teams to think about symptoms of the menopause in women with CF.
One of the take home messages about the menopause was to encourage CF teams to consider if the symptoms that older women with CF tell them about may be related to the menopause, rather than assuming that they are CF-related symptoms.
CF specialist nurse at Plymouth, and Chair of the CF Nursing Association, Caroline Whitton, told us “The conference is a great opportunity to present our newly updated nursing standards, developed with colleagues at Cystic Fibrosis Trust. I know that there is a lot of amazing work that CF nurses are doing, and I hope more of it can be spotlighted at future conferences.”
“I always find it really inspirational to hear how much work is underway. Seeing that other people working in CF are doing the same things as you gives you national and international benchmarking!” she added.
It was fantastic to see how well our Youth Advisory Group’s dictionary of CF terms – Cracking the code was received at the conference. YAG’s work on the dictionary was shared at a talk by Ellie Mindel, Lead for Children and Young People at Cystic Fibrosis Trust. She shared copies of the dictionary after her presentation and they were in hot demand!
It was brilliant to see the work of the Trust so well represented and recognised at the conference - from posters on the standards of care, new diagnosis pack and our ‘Cost of CF’ work to a presentation on the Cracking the Code dictionary developed by the Youth Advisory Group
Clare Corbett, Director of External Affairs, Cystic Fibrosis Trust.
Round up of lab based research
There were presentations about improving care and the latest research on many different symptoms and complications of CF. Alongside this there were also talks from much earlier stage, lab-based research. We heard updates on treating CF infections to the latest research on up and coming therapies that might be suitable for those unable to benefit from modulators. Here’s a quick summary of some of those topics:
- There’s still so much to learn about how to deliver safe and effective genetic therapies in CF. Even with early phase clinical trials underway, the interest and enthusiasm of delegates for making real progress was huge – every session on the topic was standing room / sitting on the floor room only!
- Learning how modulator treatment affects infections in different areas of the lung, and whether post-modulator infections respond differently to antibiotics
- Understanding how the CF protein works in different parts of the body on a cellular level to predict, prevent and treat symptoms and complications of CF
The impact of our investment in cystic fibrosis research shone through so many of the presentations at the conference. From building on the results of previously-funded research grants, to the excitement, passion and enthusiasm of those mid-way through studies that can make a difference to so many people with CF and their families in the future.
Dr Lucy Allen, Director of Research and Healthcare Data, Cystic Fibrosis Trust
Despite improvements in treatments, cystic fibrosis is still a cruel condition without a cure and there is still so much more to do to stop CF damaging and shortening lives.
Our generous partners and donors are helping us to fund these research awards and harness world-class research to help improve the quality of life for people with CF. We need your help to fund more research, speed up progress, and make sure everyone with CF can live a life unlimited.