Gut Research Advancing a Mechanistic and Personalised Understanding of Symptoms in Cystic Fibrosis (GRAMPUS-CF)

Study hosted by the University of Nottingham and funded by the UK Cystic Fibrosis Trust

RECRUITING NOW!

Join a study to explore ‘clusters’ of gut symptoms in CF to see if they have common causes.

Exploring gut symptom ‘clusters’ in cystic fibrosis

Many people with CF experience tummy symptoms that affect their daily life. Despite the availability of new CF modulator treatments such as Kaftrio/Trikafta, CF gut problems persist in many people.

Not every person with CF experiences the same combination of GI symptoms, so it’s likely there are different mechanisms that cause different combinations. This is what we aim to study.

If we can identify these different ‘clusters’ of symptoms and the mechanisms behind each one, we can develop better, more personalised treatments for people with cystic fibrosis.

What we will do

In order to identify combinations, or ‘clusters’, of symptoms and study the mechanisms behind them, our study is split into phases.

First

We use a symptom questionnaire to try and identify clusters of symptoms.

Then

To understand the mechanisms, we will look at detailed measures of inflammation, studies of the bacteria that live in the bowel, called the microbiome, and MRI scans that show the physiology and action of the way the gut functions in CF.

Person in MRI scanner

Who can get involved?

We are enrolling 320 adults and 50 children (aged 6-15 years) with CF.

We can currently accept people with CF in attending the Leeds adult CF centre or the Nottingham (adult and paediatric) centres for all groups.

People with CF anywhere in the world can get involved in group A remotely using our app.

Your participation will be helpful whether or not you have trouble with gut symptoms and whether or not you are taking one of the new CF modulator drugs.

If you meet these criteria and are interested in participating in this study, please keep reading for details of how to sign up.

Who cannot get involved?

Unfortunately, we cannot enrol anyone with an existing severe bowel condition (separate to CF) such as Crohn’s Disease.

What’s involved if you take part?

Depending on where you are based, you may be eligible for group A (questionnaires); group B (blood and stool); and group C (MRI scans).

First of all we would like you to complete some questionnaires - for 7 days, on three occasions, six months apart.

We hope to give you the option to do this on a mobile phone app.

We also invite you to give us blood and stool (poo) samples and have an MRI scan, if you are able to do this. This will help us find out more about the nature and underlying causes of gut symptoms in CF.

How to sign up

If your CF Centre is Nottingham (paediatric and adult) or Leeds (adult), please discuss GRAMPUS-CF with your CF Team.

If you are elsewhere in the world you can join using our app

If you would like further details or have any difficulties joining via the app please email the research team at grampuscf@nottingham.ac.uk

More information about GRAMPUS-CF

  • 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 the University of Nottingham. He has spent the last 10 years studying gut symptoms in CF and has recently been using MRI scans to do this.

    Prof Daniel Peckham. Daniel is a 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.

  • Yes indeed. We will learn a lot from everyone who takes part - whether or not they have troublesome gut symptoms.

  • We will ask you to fill in questionnaires on 3 occasions 6 months apart. You can also do this using a mobile phone app.

  • We will ask for a blood sample (25ml or 5 teaspoons) on 3 occasions 6 months apart. The blood test will be done in clinic.

    We would also like a stool (poo) sample on each occasion. This can be done in clinic or at home after clinic. We have a kit to help you collect stool and to post the sample.

  • For the MRI study (group C) we would like you to have done the questionnaires (group A) and the blood and stool samples (group B) first. We will then provide you with all the details of what the MRI scans involve and ask for your consent for group C.

    The MRI scans will involve a day spent in Nottingham at the Sir Peter Mansfield Imaging Centre. Adult participants have 11 scans over a period of 6 hours. We have a comfortable waiting room with WiFi for your use between scans. There will be no other CF patients at the centre on the day you visit. We will provide 2 standardised meals and we can cover travel expenses. We can only offer this opportunity to 40 patients.

  • Taking part in GRAMPUS-CF may not help you directly but we hope that, at the end of the study, we will be able to better understand the reasons behind tummy symptoms in CF. We will then identify suitable treatments to test in clinical trials.

  • Yes! The questionnaires are quick and can be done remotely on the app (group A). Some people with CF who have done the questionnaires are also happy to provide a blood sample and stool (poo) specimen (group B).

  • 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.

  • 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.

Cystic Fibrosis Trust logo
The Leeds Teaching Hospital NHS logo
Nottingham University Hospitals NHS Trust logo
University of Leeds logo
University of Birmingham logo
University of Glasgow logo
Nottingham Biomedical Research Centre logo
Motilient logo
Imperial College London logo
Nottingham Hospitals Charity logo
University of Nottingham logo
Nottingham Trent University logo
Northumbria University logo

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