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."
