GRAMPUS-CF
Gut Research Advancing a Mechanistic and Personalised Understanding of Symptoms in Cystic Fibrosis
Study hosted by the University of Nottingham and funded by the UK Cystic Fibrosis Trust
A study to explore ‘clusters’ of gut symptoms in CF to see if they have common causes.
Many people with CF experience tummy symptoms that affect their daily life, and these have persisted despite the availability of new CF modulator treatments such as Kaftrio/Trikafta. Reducing these tummy symptoms and understanding how modualtors after the GI tract were identified as priorities for research by the CF community.
We know that not every person with CF experiences the same combination of GI symptoms, so it’s likely there are different mechanisms that cause different combinations.
If we can identify these different ‘clusters’ of symptoms and then understand the mechanisms behind each one through blood, stool (poo) and MRI scans it will help us to develop better, more personalised treatments for people with cystic fibrosis.
What GRAMPUS-CF involved
In order to identify combinations - or ‘clusters’ - of symptoms and understand the possible causes behind them, our study was split into phases.
First (Group A)
We used symptom questionnaires to try and identify clusters of symptoms. These are the same questionnaires that are also being used in the GRAMPUS-CF Online study.
Then (Group B)
Some participants also provided stool (poo) and blood samples. This was to understand the underlying mechanisms which may cause tummy symptoms. We looked at measures of inflammation as well as bacteria that live in the bowel, called the microbiome.
Finally (Group C)
A small number of participants took part in MRI scans to understand the physiology and the way the gut functions in CF.
Who was involved
The study was open to people with cystic fibrosis aged 12 years and over, anywhere in the world.
Participants were also recruited from our study sites. These were:
Nottingham children and adult CF centres
Leeds children and adult CF centres
Belfast adult CF centres
Number of participants recruited in each study site
Recruitment for GRAMPUS-CF is now closed and the study team are now analysing the results. However, you can still take part in GRAMPUS-CF Online by signing up and telling us about your tummy symptoms every day for 8 days and completing a food diary for 24 hours. Please click the link to find out more.
Existing participants
Follow up of participants for the study is still ongoing for the next 12 months so if you are a participant currently taking part in GRAMPUS-CF thank you so much for your time.
You will receive email updates from us when it is time for you to complete your 6 and 12 months online questionnaires. These are really important for us to understand how your tummy symptoms might have changed over time.
More information about GRAMPUS-CF
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This is an ambitious project and we have brought together a lot of expertise. Here are some of the people who are helping us.
Prof Alan Smyth. Alan is a paediatrician and researcher, based at Queen’s University Belfast. He has spent the last 10 years studying gut symptoms in CF and using MRI scans to do this.
Prof Daniel Peckham. Daniel is a CF chest physician at the University of Leeds. He has previously led a large study of gut symptoms in people with CF and is now bringing his expertise to GRAMPUS-CF.
Prof Luca Marciani and Prof Penny Gowland. Luca and Penny are physicists at the University of Nottingham. They have great expertise in performing MRI scans of the gut and interpreting these scans.
Prof Robin Spiller. Robin is a Professor of gastroenterology at the University of Nottingham. Over several decades he has studied gut symptoms and their causes in a wide variety of medical conditions. He is bringing this expertise to CF.
Prof Chris van der Gast. Chris is a microbiologist at Northumbria University. Chris has previously helped us with research which looks at the populations of germs living in the gut of people with CF. Chris is helping us plan and deliver the larger and more ambitious GRAMPUS-CF study.
Dr Tanya Monaghan and Dr Niharika Duggal. Tanya is a gastroenterologist at the University of Nottingham. Tanya studies inflammation in the gut and has a special interest in germs like Clostridium difficile (“C. diff”). Niharika is based at the University of Birmingham and studies inflammation in the lab.
Dr Iain Stewart. Iain works at Imperial College London where he is an expert in statistics. He will help us to crunch the numbers to understand symptom patterns and the underlying causes of these patterns of symptoms.
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Absolutely. We want to hear the experiences of as many people with CF as possible. We will learn a lot from everyone who took part - whether or not they had troublesome gut symptoms.
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GRAMPUS-CF Online is part of GRAMPUS-CF. It is open to anyone with CF age 12 years and over, anywhere in the world. It involves completing online questionnaires for 8 days on tummy symptoms and a food diary for 24 hours. Participants will need to do this three times, 6 months apart. To find out more about GRAMPUS-CF Online, please click here.
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Our next step will be to test treatments which we will choose, based on what we have discovered about the underlying causes. Our ability to do this will depend on funding for a future study.
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If you email us at grampuscf@nottingham.ac.uk, your email will be picked up by Darren (Research Dietitian - Nottingham) and Hisham (Medical Research Fellow - Leeds). One of them will get back to you as soon as possible.
GRAMPUS-CF has received generous support from:
The Cystic Fibrosis Trust
The Nottingham NIHR Biomedical Research Centre
The Nottingham Hospitals Charity
Leeds Teaching Hospitals NHS Trust
Motilent
The GRAMPUS-CF Strategic Research Centre is a collaboration between:
The University of Nottingham
Nottingham University Hospitals
University of Leeds
Nottingham Trent University
The University of Birmingham
Imperial College London
Northumbria University Newcastle
