IBD BioResource: an open access platform of patients and data to accelerate research in Crohn’s and colitis.
The Inflammatory Bowel Disease (IBD) BioResource aspires to assist quality Crohn’s and colitis research and speed up patient benefit from scientific breakthroughs. Our role is to establish a national platform comprising a large number of patients with detailed genetic and descriptive clinical data. This information is made available in de-personalised format to approved researchers to analyse and also to enable recall of homogenous groups of patients for future research projects.
The birth of IBD BioResource
The IBD BioResource was launched in 2016 to help in the fight against Crohn’s and colitis. Our original aim was to build a national platform of 25,000 patients and create a detailed panel of genetic and clinical outcomes data.
The IBD BioResource is an integral part of the NIHR BioResource for Translational Research which provides a national resource of over 150,000 volunteers from the general population and patients with common and rare diseases. The NIHR BioResource and IBD BioResource are working collaboratively in supporting studies looking at how genes and other factors may influence disease susceptibility, behaviour, impact and response to treatment.
How do we operate?
All of our patients are recruited through attendance to their Gastroenterology clinics at participating hospitals across the UK. During enrolment, volunteers:
- Donate a blood sample (the DNA samples undergo genome wide analyses and are used to help identify genetic determinants of IBD susceptibility, behaviour, and treatment response),
- Complete a heath and lifestyle questionnaire,
- Allow access to their healthcare records to extract data for research, and
- Consent to be contacted to take part in future medical research, based on analysis of their samples and clinical information.
Where are we so far?
Four years in, we have surpassed our original target by 10,000 participants thanks to a very engaged patient population and dynamic IBD recruiting sites (100 participating hospitals across the UK).
Such success and enthusiasm has now encouraged us to set ourselves a new target of 50,000 …so watch this space!
What do we do with our panel of patients and data?
Our panel of patients and their de-personalised data can be accessed by approved research groups around the UK in the hope to facilitate IBD studies and accelerate the road to developing new, better targeted and successful treatments.
These studies may involve:
- Access to data only (e.g. genetic information)
- Access to data and samples (e.g. medication history and stored DNA or plasma)
- Recall studies (e.g. recontacting patients to request new samples, completing of questionnaires or taking part in clinical trials)
The IBD BioResource is currently supporting 19 active studies and has recently completed its contribution to a further 5. These studies cover a full range of research activity including:
- Analysis of existing genetics and clinical data
- Access to existing banked serum samples from patients on biologics
- Assessing the contribution of viral infection (e.g. Cytomegalovirus or CMV) to IBD pathogenesis
- Running surveys of the impact of certain aspects of IBD on quality of life
- Recall studies of patients selected by genotype for functional genomics
- Recall studies to develop early diagnostic tests
- Aiding recruitment to observational studies and intervention studies
- Recruitment to commercial drugs trials
The future of IBD BioResource
In summary, we believe that IBD BioResource and its current set up will help us understand what causes Crohn’s and colitis, what makes symptoms worse for some patients, why some treatments work for some patients and not others and what new treatments could be developed.