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.
This creates an exciting new opportunity to study the complex gastrointestinal disorders that have a rising incidence and prevalence worldwide, including the UK, with the highest rates being in Northern Europe and North America.
Children participate by providing blood, biopsy and stool samples as well as health and lifestyle data. The PIBD BioResource aims to establish a resource of over 5,000 patients with paediatric onset IBD.
The PIBD BioResource is led by Professor Holm Uhlig at the University of Oxford and is run in collaboration with Cambridge University Hospitals (CUH), the NIHR BioResource and paediatric IBD centres throughout the UK. The PIBD BioResource has been endorsed by parent representatives from the start of the project 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.
Professor Holm Uhlig, Lead Researcher for the PIBD BioResource 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 founding 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 investigators based at the following institutions include:
- Holm Uhlig and Sarah Hearn, Oxford Children’s Hospital and University of Oxford
- David Wilson and Richard Russell, Royal Hospital for Children and Young People Edinburgh and University of Edinburgh
- Miles Parkes, Rob Heuschkel and Matthias Zilbauer, Addenbrooke's Hospital and University of Cambridge
- Jochen Kammermeier, Evelina Hospital, London
- Rafeeq Muhammed, Birmingham Women's and Children's Hospital
- Nick Croft, Centre for Immunobiology, Blizard Institute, Barts and the London School of Medicine and Dentistry, London
- Richard Hansen, Royal Hospital for Children Glasgow, University of Glasgow
- Fevronia Kiparissi and Kelsey Jones, Great Ormond Street Hospital, London
- Elizabeth Renji and Marcus Auth, Alder Hey Children’s Hospital, Liverpool
This team is complemented by a parent representative, Sarah Brown, Philip Smith from CICRA, and Miles Parkes as lead of the IBD BioResource at the NIHR BioResource.
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.
“Medical research into IBD is a core objective of CICRA and 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)
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.
Professor Uhlig continues:
“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 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.”
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.”
Dr Nathalie Kingston, Director of the NIHR BioResource said:
“NIHR BioResource is excited to be opening the Paediatric IBD BioResource with the support of our valued partners. Such a new initiative will nicely complement the recent launch of our Young People’s BioResource, which recruits young individuals through schools.
“Paediatric IBD is the first dedicated paediatric BioResource programme recruiting through NHS hospitals and Trusts, with the hope of further advancing health research in diseases appearing in both childhood and adulthood.”
Recruitment to the PIBD BioResource
Recruitment will take place initially at the nine tertiary hospitals across the UK listed above. The first site was opened in March 2022 at Oxford Children’s Hospital and the first participant recruited the following month on 13 April.
Paediatric patients with IBD who are being seen under the care of gastroenterology consultants at these hospitals will be considered for participation in the PIBD BioResource and if eligible invited to take part. Sarah Hearn coordinates the multi-centre project.
For further recruitment/participation information please contact Sarah Hearn, PIBD BioResource Study Coordinator: firstname.lastname@example.org