Wednesday, 24 August 2022
New research, led by experts at the University of Nottingham and funded by Cystic Fibrosis Trust, will aim to establish the cause of gut health symptoms in people with cystic fibrosis (CF).
Many people with CF experience gut symptoms daily. These can range from bloating and stomach cramps to intestinal blockages. The symptoms can prevent people with CF eating sufficiently, be extremely painful, and disrupt daily life.
A previous survey conducted by researchers at the University of Nottingham revealed that two thirds of adults with CF have missed work and two thirds of children miss school because of gut symptoms. Treatments for gut symptoms are often ineffective because doctors do not fully understand why symptoms occur.
The Trust has awarded £750,000 funding for a Strategic Research Centre (SRC) that will run for three years. It aims to increase the understanding of the cause of gut symptoms, leading to more tailored medicines to treat people with CF in the future. The SRC will create a virtual centre of excellence, bringing researchers with different and wide-ranging expertise together to understand the cause of CF gut symptoms.
People with CF with gut symptoms in Nottingham and Leeds will be approached to take part in this study. They will report their symptoms by completing health questionnaires, undergo a series of hospital tests and donate samples for research. Looking at the results from the tests, the researchers aim to link specific gut symptoms to changes seen within the intestines of people living with CF. When these links have been made, lab studies will look to understand what triggers these changes to take place and investigate possible symptom-specific medicines that may be effective to treat them.
The gut symptoms of CF are intrusive to everyday life – and that was a strong motivator to do something in this area. At the moment, treatment is largely reliant on taking a drug that's used for something else. For example, if people with CF have difficulty going to the toilet, we’ll give a constipation drug, as we assume that the cause of the symptoms is the same. But we don’t know that. The GRAMPUS SRC will allow us to understand the cause of CF gut symptoms, generating evidence to plan more tailored clinical trials in the future."
“I get pain, bloating and constipation due to my CF. Sometimes these symptoms disrupt my work, causing me to be late. I feel like I can’t explain why I’m late as it’s embarrassing to talk about with my colleagues and my manager. I wish there was more awareness of gut problems in cystic fibrosis,” said Andy who has CF.
“More research in this area is needed as gut symptoms are a problem that make our lives worse and the treatments for them aren’t good enough. I want more people to know that CF affects more than just the lungs; even if we look well on the outside, nobody knows what’s going on inside our bodies.”
Dr Lucy Allen, Director of Research at Cystic Fibrosis Trust said: “We know that relieving pain, bloating and nausea caused by gut symptoms is a research priority for people with CF. I am delighted that a team of internationally-recognised researchers will be working together to improve how these symptoms are treated. I hope that this SRC will pave the way for better treatments in the future, and allow many adults and children with CF to live a less limited life.”
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For more information and interview requests contact the Cystic Fibrosis Trust press office on (+44) 0203 7952 193 or email pressoffice@cysticfibrosis.org.uk
About Cystic Fibrosis
- CF is an incurable life-limiting, genetic condition affecting over 10.8K people in the UK, the median age at death is just 36.
- People with CF experience a build-up of thick sticky mucus in the lungs, digestive system, and other organs, causing a wide range of challenging symptoms affecting the entire body.
- People with CF can have to take over 40 pills a day, plus undergo hours of gruelling physiotherapy, and if they catch a bug they could end up in hospital.
- You are born with CF and cannot catch it later in life but 1 in 25 of us carry the faulty gene that causes cystic fibrosis, often without knowing it. [If both parents have the faulty gene, there is a 1 in 4 chance of having a baby with CF]
- CF is the second most common genetic condition in the UK.
- Researchers at the University of Nottingham conducted an online qualitative survey to understand the impact of GI symptoms on people with CF. The results were published in the medical journal BMJ Open Respiratory Research in 2020. Smith S et al BMJ Open Resp Research
About Cystic Fibrosis Trust
- The Cystic Fibrosis Trust is the only UK-wide charity dedicated to uniting for a life unlimited for everyone affected by cystic fibrosis.
- The Trust is among the UK’s leading CF research investors, supporting world-class projects that span a wide range of areas related to CF.
- The Trust provides confidential advice, support, and information on any aspect of cystic fibrosis, including help with financial support.
- To contact the Cystic Fibrosis Trust helpline call (+44) 0300 373 1000 or (+44) 020 3795 2184.
- The work the Trust does is only made possible by the generous donations from supporters. Visit cysticfibrosis.org.uk to find out more about cystic fibrosis, the work of the Trust and how you can help.
Notes to editors:
About the University of Nottingham
Ranked 32 in Europe and 16th in the UK by the QS World University Rankings: Europe 2024, the University of Nottingham is a founding member of the Russell Group of research-intensive universities. Studying at the University of Nottingham is a life-changing experience, and we pride ourselves on unlocking the potential of our students. We have a pioneering spirit, expressed in the vision of our founder Sir Jesse Boot, which has seen us lead the way in establishing campuses in China and Malaysia - part of a globally connected network of education, research and industrial engagement.
Nottingham was crowned Sports University of the Year by The Times and Sunday Times Good University Guide 2024 – the third time it has been given the honour since 2018 – and by the Daily Mail University Guide 2024.
The university is among the best universities in the UK for the strength of our research, positioned seventh for research power in the UK according to REF 2021. The birthplace of discoveries such as MRI and ibuprofen, our innovations transform lives and tackle global problems such as sustainable food supplies, ending modern slavery, developing greener transport, and reducing reliance on fossil fuels.
The university is a major employer and industry partner - locally and globally - and our graduates are the second most targeted by the UK's top employers, according to The Graduate Market in 2022 report by High Fliers Research.
We lead the Universities for Nottingham initiative, in partnership with Nottingham Trent University, a pioneering collaboration between the city’s two world-class institutions to improve levels of prosperity, opportunity, sustainability, health and wellbeing for residents in the city and region we are proud to call home.
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