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Children with IBD to join vital research

Children with inflammatory bowel disease (IBD) will be invited to join the NIHR BioResource in Cambridge, to help vital research into Crohn’s disease and ulcerative colitis.

It’s the first time young patients have been able to participate in this type of research, which aims to investigate the genetic, immunological mechanisms and environmental factors that cause IBD.

The first paediatric IBD patient was recruited to the PIBD BioResource in April in Oxford. The five year old developed IBD at a very early age and required several medicines to control the disease.

PIBD patient + father
The first paediatric patient recruited to the PIBD BioResource in April, with his father.

Children participate by providing blood, biopsy and stool samples as well as health and lifestyle data.

It's hoped over 5,000 patients with paediatric onset IBD will take part and be added to the BioResource.

Inflammatory bowel diseases in children are increasing in numbers in the UK and worldwide

Prof Holm Uhlig, lead researcher for the PIBD BioResource

The paediatric IBD (PIBD) BioResource is led by Professor Holm Uhlig at the University of Oxford and is run in collaboration with Cambridge University Hospitals NHS Foundation Trust (CUH), the NIHR BioResource and paediatric IBD centres throughout the UK.

Professor Holm Uhlig, lead researcher for the PIBD BioResource said:

“There is substantial unmet need to understand the genetic factors that cause IBD and help to identify novel precision therapies. Our collaborative project will support both UK and international research towards more personalised medicine in PIBD.”

“We are very keen to explore how genetic discoveries can be translated into routine clinical care via the Genomic Medicine program of the National Health System. We have consulted patients and parents while setting up the PIBD BioResource and are most grateful for the support of the patient charity CICRA.”

The PIBD BioResource research network provides the scientific research community with a resource of data and samples to study mechanisms of paediatric onset IBD required to develop better diagnostics and medicines.

The founding investigator team are drawn from nine major centres of paediatric gastroenterology across the UK, including CUH.

These centres will be recruiting paediatric patients into the BioResource who are newly diagnosed with IBD as well as those who are already known to have IBD.

Prof Miles Parkes
Prof Miles Parkes

There is an enormous amount to learn from studying children with IBD, of potential benefit to their future care

Prof Miles Parkes, chief investigator for the IBD BioResource, Cambridge

Launched in 2016, the IBD BioResource connects leading IBD clinicians and researchers with people living with Crohn’s Disease or Ulcerative Colitis.

The Cambridge-led research initiative is now open in more than 90 NHS hospitals across the UK and has over 35,000 patients with Crohn’s Disease and Ulcerative Colitis taking part.

Professor Miles Parkes, chief investigator for the IBD BioResource said:

“I am delighted to see the launch of the Paediatric IBD BioResource led by Holm Uhlig and supported by key opinion leaders in paediatric IBD across the UK.

"There is an enormous amount to learn from studying children with IBD, of potential benefit to their future care but also impacting how we understand IBD in adults – both the similarities and the differences can be instructive.

“The opportunity to extend the highly successful IBD BioResource to support children, their families and their clinical researchers is one that we welcome, and we look forward to seeing this collaboration bear fruit in the years ahead as we research together and work towards improved treatments in IBD, and maybe one day a cure.”

More about Inflammatory Bowel Disease (IBD)

Inflammatory Bowel Disease (IBD) is a term used to describe two main conditions, Crohn’s Disease and Ulcerative Colitis, which together affect around 500,000 people in the UK.

It is a life-long disease with no known cure.

People with the condition often find themselves in severe pain and suffer with abdominal cramps, recurring diarrhoea, bloating, weight loss and fatigue. When medical treatments don’t work or complications of IBD develop, patients will need to undergo surgery to remove parts of their bowel.

Paediatric Inflammatory Bowel Disease

About 25% of patients with IBD present before the age of 18 years.

Accelerating research into the causes of Crohn’s Disease and Ulcerative Colitis in children and adolescents is essential since paediatric patients have several specific features and the disease can affect their growth and development.

For more information:https://www.nhs.uk/conditions/inflammatory-bowel-disease/