We believe that the voice of people with Crohn’s and Colitis should be at the centre of all research into Crohn’s and Colitis.
We partner on key research projects to help researchers recruit and retain a diverse range of participants; embed patient and public involvement in all aspects of their project; and communicate the outcomes of their research to the Crohn’s and Colitis community. In this way we help connect people affected by Crohn’s and Colitis to the research we support and fund.
Please see the list of our partnerships below to see how we’re doing this.
We’re partnering up to combat pain through the ADVANTAGE pain project, a new data hub that is studying chronic pain experienced by people with Crohn’s and Colitis, and other long-term conditions. This project is being jointly funded by the Medical Research Council (MRC) and the charity, Versus Arthritis.
We sit on the Patient Charity Advisory Board, alongside one of our Research Champions Anwen, to ensure the patient voice is embedded throughout the project.
We will support the recruitment of people living with Crohn’s and Colitis who experience pain over the course of the programme to form a National Pain Resource of patients who can then be selected for future studies. We will also support people to get involved in the programme through Patient & Public involvement events.
The ADVANTAGE project will be working with the Pain Collaborative Network, set up by us to speed up chronic pain research.
To learn more about ADVANTAGE, please read our recent news item on the project here.
The CLARITY trial is looking at the impact of two biologic medicines (infliximab and vedolizumab) on COVID-19 infection, vaccination and immune response in people with Crohn’s or Colitis. The researchers want to see if people on these medicines produce the same immune response to coronavirus and to coronavirus vaccines.
CLARITY is a one year study led by the IBD research team at the Royal Devon and Exeter NHS Foundation Trust and the University of Exeter Medical School. We are supporting this research. To learn more about the study, please see our webpage dedicated to CLARITY here.
Researchers are using blood samples collected since the start of 2020 to look at differences in positive antibody rates between people with Crohn’s or Colitis on different drugs, and then look at what happens people have the first and second doses of their coronavirus vaccines.
As partners in this project, we attend project team meetings and provide support to their Patient Advisory Group, which includes one of our Research Champions Laura
To learn more about CLARITY, and see their latest published results please visit their website here.
Gut Reaction is a research project that brings together data from thousands of people across the UK to help scientists carry out research to improve the lives of people living with Crohn’s and Colitis. We are working closely with the Gut Reaction team to keep the patient perspective at the heart of the project. Our research champion Kathleen Bone supports this project. Find out more on our Gut Reaction information page.
The IBD Bioresource is a national platform designed to speed up research into Crohn’s Disease and Ulcerative Colitis and help develop new and better treatments for the conditions. The IBD BioResource has recruited over 34,000 patients from across the UK who have all consented for their health data to be used for research.
We have been involved with the IBD BioResource since it was formed, providing both funding and support with recruitment. Excitingly, we are now also supporting the IBD BioResource through the Gut Reaction programme (see above) in creating an even richer health data resource for researchers to access.
To learn more about the IBD BioResource, please visit this webpage.
Fatigue, pain, and urgency can be big problems for many people living with Crohn’s and Colitis, even when they aren’t having a flare. IBD BOOST aims to develop and test psychological management tools to relieve these life-changing, chronic symptoms and improve quality of life.
We are partners in IBD BOOST to make sure the needs and priorities of people with Crohn’s and Colitis are represented at each stage of the project. We also funded a preliminary research project by Professor Christine Norton and Dr Louise Sweeney, which has underpinned the planning of IBD BOOST.
The IBD BOOST project began in 2017 and is due to complete at the end of 2022. During this time, it will:
- Start by taking a survey of people with IBD, that we will help distribute, to see if a symptom management tool would be useful.
- Produce the interactive online symptom management programme, based on a nurse-led algorithm developed from scientific psychological research. This will then be systematically tested and, if it can help people with Crohn’s and Colitis, used as a treatment tool.
You can find out more about IBD BOOST on their website.
Crohn’s & Colitis UK are working with Coeliac UK to fund a research project looking into the epidemiology of Crohn’s Disease, Ulcerative Colitis, dermatitis herpetiformis, and coeliac disease. This project will establish the latest numbers of people with these conditions and better understand how they were diagnosed.
Epidemiology is the study of how often conditions occur in different groups of people and why. It’s important because a full of picture of Crohn’s and Colitis can help us develop high quality care across the UK, support people to manage their condition and drive world-class research.
Research strongly suggests that 500,000 people in the UK have Crohn’s or Colitis. This figure is drawn from three completed studies carried out in Exeter, Lothian and Wales . Early insights from this project supports this research.
Researchers at the University of Nottingham will give an accurate picture of just how many people there are with Crohn’s or Colitis in the UK and the diversity of this group. To do this, they will use the Clinical Practice Research Datalink (CPRD), which holds patient healthcare records from GPs.
Results will also provide information on age, gender, ethnicity, socioeconomic position, and where people live, as well as whether they previously diagnosed with Irritable Bowel Syndrome (IBS). Understanding these details is crucial for helping us understand the causes of these conditions and their impact on the people living with them.
The first results of this project should be available in late 2021.
PredictSURE IBDTM is the world’s first validated prognostic test for guiding treatment options in Crohn’s and Colitis - this is a major step towards personalised medicine. The PredictSURE IBDTM test is produced by PredictImmune, a spin-out company from the University of Cambridge.
PredictSURE IBDTM is based on years of research looking at which genes and immune markers look different in people with Crohn’s and Colitis, including a research project by Dr James Lee that we funded back in 2008. Our contribution to this research is recognised by a profit share from the company.
The PROFILE trial funded by the Wellcome Trust aims to demonstrate whether this prognostic test can enable the delivery of personalised therapy in Crohn’s disease, and that this improves outcomes for patients. Crohn’s & Colitis UK have helped with recruitment of patients onto the study as participants and have also supported patients in helping shape the project. We currently have our Research Champion Louise sitting on the programme management team who gives us regular updates on the project. You can find out more about the project on their website.