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Inflammatory bowel disease: identifying children who are most in need of intensive early treatment

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What did the project achieve?

“Our findings are of major importance as they strongly suggest a fundamental difference in how inflammatory bowel disease behaves in children compared to adults,” says Professor Matthias Zilbauer of the University of Cambridge. “We also found that children are at greater risk of severe disease, suggesting that doctors should consider using more potent treatments at the time of diagnosis.”

Inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis, causes debilitating symptoms including pain, bleeding and diarrhoea. Sadly, there is no cure, but treatments are available that can help to control symptoms, including potent drugs and surgery. But these can cause side effects – and unfortunately, there is no way for doctors to predict the severity of a child’s symptoms in advance, making it difficult to select the best treatment from the beginning.

Studies in adults had suggested it was possible to identify those at greatest risk of developing severe disease by analysing certain blood cells. Professor Zilbauer’s team tested samples from more than 100 children with IBD to investigate whether this test could also be useful for predicting outcomes in this age group.

“Our results were unexpected, with the marker predicting severity in adults not found in children with IBD,” says Professor Zilbauer. “We also found that the condition was typically more severe in children compared to those who are diagnosed in adulthood.”

This work is set to have an immediate clinical impact, having shown that this blood test may not be suitable for predicting disease severity in children with IBD.

“Our findings rule out using this test to guide treatment decisions for children with IBD,” says Professor Zilbauer. “It also suggests that, in the absence of a predictive test, more aggressive treatments should be considered sooner for all children, given that their disease is likely to be more severe.”

This research was completed on

Around one quarter of people with inflammatory bowel disease (IBD) are under 16 years old when diagnosed.1 At first, it’s not possible to be sure how their disease will progress – whether they will go on to have only mild symptoms and need minimal treatment, or whether they will have more severe problems and need to take potent medicines or have surgery. This makes it hard to decide what sort of treatment to start with. Dr Matthias Zilbauer, of the University of Cambridge, is developing a way to predict how severe a child’s illness will be, so they can get more personalised treatment from the beginning.

How are children’s lives affected now?

Over 250,000 people in the UK have an inflammatory bowel disease (IBD), such as Crohn’s disease and ulcerative colitis.2-4 These conditions cause debilitating symptoms, including diarrhoea, abdominal pain and tiredness. People with severe symptoms can need major surgery to remove damaged parts of the bowel.

“More and more children are being diagnosed with IBD, which can affect their overall wellbeing and learning” says Dr Zilbauer.4-6 “There’s no cure, but evidence suggests that early use of the most potent medicines may improve the long-term outlook for children who are at highest risk of having very severe symptoms. These medicines can have side effects though, so they’re best avoided if children’s symptoms are likely to be mild.”

Unfortunately, it’s not possible to predict early on how severe a child’s illness is likely to be. This limits doctors’ ability to suggest treatment strategies that are tailored to the needs of each individual child at the time of diagnosis.

How could this research help?

The researchers aim to find a way to predict how a child’s condition is likely to progress if they are diagnosed with IBD – whether the child’s symptoms are likely to be mild and require minimal treatment, or more severe, needing more intensive treatment.

Studies in adults suggest it might be possible to identify people who are at highest risk of having severe symptoms by analysing certain blood cells. Dr Zilbauer has been investigating whether this approach might also work for children and early results are promising. In this project, the team is finding out more about the potential benefits of the new test in children and simplifying the techniques used, so they are suitable for routine use.

“If our new blood test does allow doctors to predict disease severity in IBD, then they could recommend more personalised treatments from the time of diagnosis,” says Dr Zilbauer. “This may improve children’s long-term health and their quality of life.”


1. Crohn’s and Colitis UK. Children and young people with IBD: A guide for schools. http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/children-schools-IBD-guide.pdf Website accessed 10 December 2016.

2. National Institute for Health and Clinical Excellence (NICE). Crohn’s disease: management. Last updated May 2016. https://www.nice.org.uk/guidance/cg152/chapter/Context Website accessed 10 December 2016.

3. National Institute for Health and Clinical Excellence (NICE). Ulcerative colitis: management. Published date: June 2013. https://www.nice.org.uk/guidance/cg166/chapter/Introduction Website accessed 10 December 2016.

4. IBD Standards Group. IBD Standards. 2013 Update. Website accessed 10 December 2016.

5. Hope B et al. Rapid rise in incidence of Irish paediatric inflammatory bowel disease. Arch Dis Child 2012; 97: 590-4.

6. Henderson P et al. Rising incidence of pediatric inflammatory bowel disease in Scotland. Inflamm Bowel Dis 2012; 18: 999-1005.





Project Leader Dr Mathias Zilbauer MD PhD MRCPCH
Project Team Dr Robert B Heuschkel MBBS MRCP MRCPCHDr Oliver Stegle PhDDr Paul A Lyons PhD
Project Location University Department of Paediatrics, University of Cambridge
Project Location Other Department of Paediatric Gastroenterology, Addenbroke's Hospital, CambridgeEMBL-European Bioinformatics Institute, CambridgeDepartment of Medicine, Cambridge Institute for Medical Research
Project duration 2 years
Date awarded 22 November 2016
Project start date 13 November 2017
Project end date 12 November 2019
Grant amount £100,000
Grant code GN2491


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