World IBD Day aims to raise awareness, urge governments and healthcare professionals to take action and to show support to the ten million people worldwide that live with IBD. In the UK alone, over 500,000 people are living with the disease. Our partners, Crohn's and Colitis UK, are one of over 50 organisations around the globe joining the mission to support those with the condition.
You can find a range of resources available on their website for those who have newly been diagnosed, existing IBD patients, as well as a guide for family and friends on how to directly support someone. For World IBD Day, they are running a series of virtual events on May 19th - there are still tickets available for the evening event!
May 2022 marks our sixth year proudly supporting research in IBD!
Our IBD BioResource team have released their latest newsletter today to provide volunteers and the research community with updates from across the study. Below we've highlighted some of the key talking points but if you want more detail, please have a read of the full newsletter.
The IBD BioResource, which launched in 2016, connects leading IBD clinicians and researchers with people living with Crohn’s Disease or ulcerative colitis. It is designed to speed up the clinical benefits that can derive from research advances so that current and future patients can benefit sooner. Our national ‘platform’ facilitates the recruitment of participants for future research projects, by providing researchers with detailed de-personalised data.
Aim
Our goal is to recruit a very large panel of 50,000 patients with Crohn’s or colitis (Main Cohort) as well as 1,000 newly diagnosed patients (Inception Cohort) - and up to 5,000 paediatric onset IBD patients - all with health data and on whom we will generate detailed genetic data.
Professor Miles Parkes, Chief Investigator of the IBD BioResource said:
“The BioResource team have been using the last two years to refine key aspects of the project… [including] the set up of the paediatric IBD BioResource and collection of detailed health record data to enable much more powerful IBD analyses.
"New recruitment to the IBD BioResource stopped during the pandemic [...] [however], over the last 6 months we have been gradually building things back up and over the next 12 months will have a major focus on recruiting young people who have Crohn’s or colitis or people who have been newly diagnosed with conditions, alongside adults with existing IBD.
"There is still huge demand from scientists and researchers up and down the country to access the data and samples that we hold in the IBD BioResource and to link with you, our participants, for more downstream studies."
Paediatric Inflammatory Bowel Disease (PIBD) BioResource
In April, the first patient (photo below) was recruited at Oxford Children’s Hospital to a new paediatric arm of the IBD BioResource. The new cohort aims to help drive research into Crohn’s Disease & ulcerative colitis in children and adolescents by recruiting paediatric IBD patients to investigate genetic, immunological mechanisms and environmental factors.
The project is funded by the Crohn’s in Childhood Research Association (CICRA) and the NIHR, and led by Professor Holm Uhlig at the University of Oxford. The aim is to establish a resource of up to 5,000 patients with paediatric onset IBD, with recruitment due to begin at a further eight tertiary hospitals across the UK later this year.
Read more about the launch of the paediatric IBD BioResource.
Driving Research
The success of the IBD BioResource and its partners in facilitating important IBD research and contributing to tomorrow's treatments strongly relies on the use of its panel of volunteers, those with IBD and those used as controls.
2021-2022 saw 17 Research applications being submitted, four of which have been completed, three currently recruiting, six having just been approved and three under review by our NIHR BioResource National Steering Committee.
Gut Reaction
Gut Reaction, the Health Data Research Hub for IBD, works in partnership with patients and the public, the UK IBD Registry, Crohn’s & Colitis UK, collaborating NHS Trusts, and three technology partners ANS, Privitar and Microsoft.
Their work focuses on the development of methodologies to link clinical (e.g. medication), biochemical (e.g. blood results), imaging (e.g. endoscopy and radiology) and histopathology data with IBD BioResource data (e.g. genomics, clinical and health and lifestyle information).
Achievements
It’s been 3 years since the NIHR and IBD BioResource started their journey with Gut Reaction and, despite suffering major setbacks and delays due to the pandemic, there have been some notable achievements:
- 6,000,000 patient laboratory test results received from Gut Reaction participating NHS Trust
- 28,000 radiology images received from Gut Reaction participating NHS Trust
- 11,000 participating patients
- 4 studies which have or are going to utilise data acquired by Gut Reaction
Publications
Goldberg R, Clough et al. (2021). A Crohn's Disease-associated IL2RA enhancer variant determines the balance of T Cell immunity by regulating responsiveness to IL-2 signalling. Journal of Crohn's & colitis, 15(12), pp. 2054-2065. doi: 10.1093/ecco-jcc/jjab103
Nelson A, et al (2021). The Impact of NOD2 genetic variants on the gut mycobiota in Crohn's Disease patients in remission and in individuals without gastrointestinal inflammation. Journal of Crohn's & colitis, 15(5), pp. 800-812. doi: 10.1093/ecco-jcc/jjaa220
Alexander JL, et al. VIP study investigators. (2022). COVID-19 vaccine-induced antibody responses in immunosuppressed patients with inflammatory bowel disease (VIP): a multicentre, prospective, case-control study. The lancet. Gastroenterology & hepatology, doi: 10.1016/S2468-1253(22)00005-X
Want to make a difference?
Our volunteers help to advance health research that benefits generations to come. Every volunteer makes a difference.
This article is a summary of the key points taken from the latest IBD BioResource newsletter, released for World IBD Day 2022.
Learn more about our IBD BioResource, including how to join via your clinician (IBD patients) or by joining our general population cohort.
If you are a researcher, learn more about using the NIHR BioResource to support your work, in IBD or beyond.