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Seven research highlights from 2024
1. Celebrating the success of the Cambridge Innovation Hub for lung health
The CF Innovation Hub on lung health at the University of Cambridge was established in 2018 under the leadership of Professor Andres Floto. Thanks to the incredible generosity of our supporters, Cystic Fibrosis Trust successfully raised £5 million for the Innovation Hub, which was match-funded by the University of Cambridge.
There have been some incredible successes over the past six years, including some really important discoveries about how the bacteria Pseudomonas aeruginosa cause infections in people with CF. “Our research on Pseudomonas has taught us about the biology of CF and revealed important ways we might be able to improve immunity against invading bacteria in CF and potentially other conditions,” said Professor Floto.
You can read more about the important progress the hub has made in understanding lung infections in our impact report.
2. Learning about the four exciting research programmes on CF lung health
Funded in partnership with the charity LifeArc, we were delighted to announce a new Translational Innovation Hub network on lung health. The four programmes will be led by researchers based in Cambridge, Imperial College London, Liverpool and Manchester, with the aim to fast track new research and treatments to improve lung health and quality of life for people with CF.
Sarah has cystic fibrosis and experienced her first lung infection when she was a baby. “This condition affects everything about my life, every single day. I have to adjust my life around my symptoms, in everything from work to friendships,” she told us.
Sarah is hopeful that this new research could offer her a better quality of life in the future. “These new Hubs give me hope because improving research into the cause of exacerbations and the development of potential new treatments takes away a lot of my fears around what my health is going to look like in the future."
Watch this video to find out more.
3. Contributing to NICE’s approval of CFTR modulators
Back in June, we shared the fantastic news that landmark long-term deals have been confirmed to make life-changing CF modulator drugs – Kaftrio, Symkevi and Orkambi – available on the NHS across the UK. This follows many years of campaigning by the Trust and CF community, as well as dedicated data collection and analysis from the UK CF Registry. The team provided analysis of the difference these medicines have made to people with CF throughout the UK during the three years of interim access.
4. Supporting even more people to take part in CF clinical trials
In 2024, through our Clinical Trials Accelerator Platform (CTAP), we have been able to increase the opportunities for people with CF to take part in research. The Trust launched CTAP in 2017 to help more people with CF access trials. CTAP supports a network of CF centres and works with people who run trials to set up more trials in the UK. This year we published our CTAP in numbers report, demonstrating the incredible progress we’ve made. In 23/24, over 2,000 people with CF enrolled on to a CTAP clinical trial, helping to develop new treatments for everyone with CF. We’ve also improved our information for people with CF and their families thinking of taking part in research. Check out our information.
“I have taken part in over 20 trials throughout my life. It's my way of giving back and returning some of the help and support I've had over the years with my CF. I feel I have a responsibility to help the community as they have helped me."
Jane, who has CF and is part of our Involvement Group
5. Representing the CF community in everything we do
The voice of the CF community is at the heart of everything we do and is an important way to show CF researchers the difference it can make to include people with CF throughout the research process. A video of Katie talking about her thoughts on growing older with CF was shown in front of over 2,000 delegates in Europe’s biggest CF conference in June in Glasgow. A big thank you to Katie for sharing her experiences. You can find out more about joining our involvement group here.
6. Funding exciting new research to address the community’s top priorities
Back in March we announced two new strategic research centres (SRCs) each addressing a top research priority for the CF community. An SRC titled ‘Novel lead compounds as potential suppressor drugs for CFTR Premature Termination Codon (PTC) mutations’ will be led by Dr Mike Gray at the University of Newcastle. The team will focus on designing compounds that could be CF medicines of the future for those with rare mutations who are not able to benefit from CFTR modulator medicines. The second SRC awarded this year, ‘MATeRnal, InfAnt, Reproductive & Child Health in CF (MATRIARCH)’, will examine the impact of pregnancy, childbirth, and breastfeeding for those with CF, and also look at important reproductive health decision-making for women and girls with CF throughout their lives. This SRC will be led by Dr Imogen Felton and Professor Jane Davies of Royal Brompton Hospital and Imperial College in London. Read more here and listen to our podcast on pregnancy and CF.
“It’s great to see Cystic Fibrosis Trust investing in research that matters most to people with cystic fibrosis. The commencement of a SRC to look at the impact of pregnancy and beyond shows how much life has changed for the better for people with CF. And for those who haven’t been able to benefit from modulators, it is fantastic to see the Trust put funding into research that aims to provide them with the same life opportunities.”
Zoë, mum to twins with CF
7. Using UK CF Registry to improve the lives of people with CF
Data from the UK CF Registry can help to identify trends and patterns that tell us new things about CF and potentially better ways to support people in the future. 2024 has been a bumper year for the UK CF Registry Team in terms of Data Requests. We received 63 requests this year, bringing the overall total to over 500. Requests to access data are examined in detail by a multidisciplinary committee including doctors, researchers and the members of the CF community. This year most of the requests were from researchers wanting to use UK CF Registry data to increase our knowledge of CF, other requests included support to help people gain access to modulators and to pharmaceutical companies to help set up new studies in the UK. Find out more about the UK CF Registry here.
Thank you to every single one of our supporters who helped make all of this possible.
With your help, we can continue to fund the research that makes life with CF unrecognisable from what it is today. Because we won’t stop until CF does.
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