Recent years have seen major advances in understanding the causes of Crohn’s disease and ulcerative colitis. This particularly relates to their genetic basis, and how gene variants affect the immune system of people who develop IBD. The key challenge now is to translate this new knowledge into new treatments, and use it as a platform to drive towards a cure for IBD. This is where the IBD BioResource comes in – allowing scientists and researchers to access groups of patients with Crohn’s or colitis who have uniform genetic make-up or clinical features, so that they can ask very focused questions relating to disease mechanisms and potential new treatments.
This website tells you what the IBD BioResource is doing and how you can help us to advance research in Crohn’s disease and ulcerative colitis.
Inflammatory bowel disease (IBD) mainly comprises the conditions Crohn’s disease and ulcerative colitis. These can affect adults and children alike, but are most common in late teen years through to age 40, producing a variety of debilitating symptoms such as abdominal pain, weight loss, diarrhoea and urgency. There are a variety of treatments for the gut inflammation including steroids, immunosuppression and injected ‘biological’ therapies, but despite these many patients with IBD ultimately require hospitalisation and / or abdominal surgery due to loss of response to treatment or development of complications. Unsurprisingly in its severe forms IBD can have a major adverse impact on health and quality of life, disrupting education, careers and family life.
The triggers for IBD are currently unknown, but recent years have seen major advances in understanding the factors and pathways that predispose people to developing IBD. Much of this knowledge has stemmed from new genetic technologies, and our UK IBD genetics consortium has played a central role in driving forward this research.
The IBD BioResource is a UK-wide initiative designed to capitalise fully on the recent advances in understanding IBD causation, and maximise their potential translation to clinical benefit – for example in facilitating the development of new and better therapies, helping to understand the triggers for disease flares or allowing identification of predictors of treatment response.
Our goal is to recruit a very large panel of 25,000 patients with Crohn’s disease or ulcerative colitis in whom detailed clinical and genetic data are recorded and who are willing to be recalled for future research projects. This ‘recallability’ is a critical new feature, allowing scientists and investigators with approved projects to rapidly access precisely defined sub-groups of patients, for example based on their genetic make-up or disease characteristics such as response to specific therapies or development of particular complications. The range of potential projects will be wide (anything from answering questionnaires to providing fresh samples to participating in trials of new therapies). Importantly IBD BioResource volunteers, once notified of new projects, will be free to opt in or opt out as they wish at the time, according to their availability, their interest in the particular new project and their willingness to participate.
You may review our Patient Information Sheet here