Why study rare conditions in childhood IBD?

In addition to the devastating effects of chronic disease children with IBD are at risk of other severe and rare conditions including cancer, kidney failure, severe infections, liver failure and blood clots (in the legs/lungs or brain).

These are all rare in children with IBD and so even specialists in childhood IBD have little or no direct experience of them. Sometimes the risk of these issues are discussed with patients and families when new treatments are started and this can create a lot of concern.

How will this study help?

Using data collected through an international collaboration of 150 paediatric IBD specialists this project will allow us to examine
these rare complications in detail (using advanced statistical techniques) with the aim of understanding the cause of the
complication and so identify ways to predict and prevent them.

In partnership with experts, this project will develop and share clinical guidelines for managing these rare problems and support clinicians seeing them for the first time. We hope this will improve the level of care for children, as well as helping their parents cope with an incredibly stressful situation.

The research team

This study will be delivered by an international team led by Professor Nicholas Croft at the National Bowel Research Centre