We believe that the best research happens when researchers work according to patients’ needs. To help bring this about, we sometimes represent our supporters in partnerships with research organisations, and our research champion volunteers support us by being our link with research projects. Please see the list of our partnerships below to see how we’re doing this.
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, faster. We are working closely with the Gut Reaction team to keep the patient perspective at the heart of the project, one of our research champions supports this project. Find out more on our Gut Reaction information page.
We have partnered with CLARITY IBD, an exciting study investigating:
- The relationship between coronavirus (SARS-CoV-2) and Crohn’s and Colitis, collectively referred to as inflammatory bowel disease (IBD),
- The impact of conventional IBD treatments (i.e. biologics and immunomodulators) on coronavirus infection and immunity.
This study will use blood serum samples from IBD patients that were donated to the NIHR IBD BioResource during 2020, as well as ongoing sampling from new volunteers.
We are proud to partner with this study because they are working hard to include the patient voice and shape the trial design around patient priorities.
For example, in a ground-breaking and empathetic move, the team will be getting in touch with the participants regularly to let them know the results of the serum tests for SARS-CoV-2 antibodies. They are also including a patient representative on their Study Management Team, as well as working closely with a Patient Advisory Group.
As partners in this project, we will help support their Patient Advisory Group and attend Study Management Team meetings, thereby ensuring that the study works well for patient participants.
More information can be found on their website.
Fatigue, pain, and urgency can be big problems for many people living 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 improving quality of life.
Crohn’s & Colitis UK 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. Moreover, we 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 Crohn’s & Colitis UK 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 in the clinic.
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.
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.
This project will establish the latest numbers of people with the conditions and better understand how they were diagnosed. 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. Research in parts of the UK strongly suggests that 500,000 people in the UK have Crohn’s or Colitis, but this project will report on the full picture. 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 those with the conditions were 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 the spring of 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 in Crohn’s and Colitis. 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 sponsored back in 2008. Our contribution to this research is recognised by a profit share from the company.
If your hospital or healthcare centre utilises the test and your doctor thinks it would help better understand your condition, they will offer it to you. You would then just need to supply a blood sample to be tested.
Back in 2017 we embarked on a partnership with HCD Economics to represent patient interests in two projects:
1. Cost Associated with CRohn's DisEase (CARE)
2. Living with Ulcerative Colitis, IDentifying the socioeconomic burden (LUCID)
The effects of Crohn’s and Colitis on patients’ physical well-being can be very serious. However, the social and economic impacts of these conditions, such as dietary expenses and employment, are also really important. Additionally, it has been estimated that the NHS spends £6,156 every year per person in remission and £10,513 per person in relapse.
The CARE and LUCID studies were developed to uncover the social and economics demands on patients and the NHS, with the aim of shaping public health policies and improving clinical guidelines.