A new National Institute for Health and Care Research (NIHR) BioResource aimed at investigating inflammatory bowel disease (IBD) in children has opened, with the NIHR Oxford BRC playing a key role.
The new Paediatric Inflammatory Bowel Disease (PIBD) BioResource will drive research into Crohn’s disease and ulcerative colitis in children. It aims to recruit paediatric IBD patients to investigate genetic, immunological mechanisms and environmental factors.
The NIHR BioResource is a national panel of volunteers who have consented to participate in health research. Children recruited to the PIBD Bioresource participate by providing blood, biopsy and stool samples as well as health and lifestyle data. The PIBD aims to establish a resource of over 5,000 patients with paediatric onset IBD in the BioResource.
The first recruitment site was opened in March 2022 at the Oxford Children’s Hospital and the first participant recruited the following month.
The PIBD BioResource is led by the University of Oxford’s Professor Holm Uhlig, a senior researcher in the Oxford BRC’s Gastroenterology and Mucosal Immunity Theme, and is run in collaboration with Cambridge University Hospitals (CUH), the NIHR BioResource and paediatric IBD centres throughout the UK.
Professor Uhlig (pictured left) said: “Inflammatory bowel diseases in children are increasing in numbers in the UK and worldwide. 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 first paediatric IBD patient was recruited to the PIBD BioResource in April 2022 in Oxford. This patient had developed IBD at a very early age and required several medicines to control the disease. 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.”
The investigator team are drawn from nine major centres of paediatric gastroenterology across the UK. The investigators are specialists in the field of PIBD and lead research projects on the epidemiology and causes of IBD in children. 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.
The PIBD BioResource has been endorsed by parent representatives and is supported by a grant from Crohn’s in Childhood Research Association (CICRA), a charity working to improve outcomes for children living with IBD.
Graham Lee, Chair of CICRA said: “CICRA is delighted to be funding the PIBD BioResource that is being led by Professor Holm Uhlig and his team, collaborating with other teams in the UK on this important initiative.
“We believe that this study will provide invaluable research into the potential causes of IBD and will provide a key set of data for medical professionals both in the UK and internationally to better identify and treat IBD and improve support to families of children who have this debilitating disease.”
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 do not work or complications of IBD develop, patients often need to undergo surgery to remove parts of their bowel.
About 25 per cent 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.
Professor Uhlig added: “It is exciting to see how the PIBD BioResource already shapes plans for several national research projects. This includes the use of cutting-edge cellular models to study intestinal barrier function and the use of single cell technologies to understand the immune system in the intestine.
“We are very keen to explore how genetic discoveries can be translated into routine clinical care. We have consulted patients and parents while setting up the PIBD BioResource and are most grateful for the support of the patient charity CICRA.”
For further recruitment and participation information please contact: Sarah Hearn, PIBD Study Coordinator at firstname.lastname@example.org