New hope for people who suffer with IBD with the launch of a major new research resource
People with Crohn’s Disease and Ulcerative Colitis are being asked to take part in a nationwide genetic database to help develop new treatments.
Inflammatory Bowel Disease (IBD) is a term used to describe two conditions, Crohn’s disease and Ulcerative Colitis. These lifelong illnesses flare at intervals, producing debilitating symptoms including cramping abdominal pains, anemia, weight loss and diarrhoea. They require on-going drug therapy, and many patients also require major surgery.
In the UK, more than 300,000 people are affected by IBD including multiple Olympic gold medalist, Sir Steve Redgrave, professional footballer Darren Fletcher and former England rugby international Lewis Moody.
The exact causes of Crohn’s disease and Ulcerative Colitis are unclear, but there is evidence that IBD can cluster in families and having an affected family member is a risk factor.
The goal of the new IBD BioResource is to accelerate research in Crohn’s disease and Ulcerative Colitis and build on recent major advances in understanding of the genetic basis of these conditions. The IBD BioResource will be part of the NIHR BioResource – comprising volunteers from around the UK who are willing to be approached to participate in research studies and trials on the basis of their genetic make-up. The IBD BioResource is being launched for roll-out nationwide through 2016.
Dr Miles Parkes, a consultant gastroenterologist at Cambridge University Hospital and lead for the IBD BioResource project, said: “The IBD BioResource is a nationwide effort, recruiting people who have Crohn’s disease or Ulcerative Colitis specifically so that they can help researchers to better understand the causes of IBD and develop better treatments.
“Provided we can mobilise large-scale recruitment of patients and clinicians this truly should become a major new platform to support world-class IBD research in the UK over the next 10 years. We are very excited to have lined up such strong support, with funding partners for the IBD BioResource including the NIHR, the Medical Research Council (MRC), the Wellcome Trust and Crohn’s and Colitis UK”
A group of consultant gastroenterologists and scientists working with Dr Parkes under the banner of the ‘UK IBD Genetics Consortium’ have led several of the ground-breaking IBD genetics studies in recent years – working with more than 20,000 patients with IBD who have given DNA samples in their local hospitals including Cambridge, Edinburgh, Exeter, London, and Newcastle.
Dr Miles Parkes added: “The key challenge is to translate this new genetics knowledge into improved treatments, and use it as a platform to drive towards a cure for IBD. Now that it’s understood which genes are involved there is a need to understand what these genes are doing to cause IBD, and how these effects might be reversed.
“To do this scientists need to be able to access IBD patients based on their known genetic make-up, so that very focused questions can be asked about gene function and how to modify this. This is where the IBD BioResource comes in.”
The IBD BioResource will be run across the UK. Support from the patient organisation, Crohn’s and Colitis UK has been critical, using £120,000 raised by James Prior to unlock a much larger grant of more than £1 million from the MRC and the Wellcome Trust.
Dan McLean from Crohn’s and Colitis UK said: “This is indispensable work in the ever challenging fields of diagnosis and treatment of chronic conditions. To access people with IBD based on their genetic make-up will allow many highly focused questions to be asked for the first time. This could allow for personalised medicine and target specific treatments at people we know are likely to benefit.”
The NIHR are also playing a major role in this partnership, allowing the IBD BioResource to be run as part of the NIHR BioResource.
Life Sciences Minister George Freeman MP said: “This exciting BioResource project to recruit 25,000 patients and their families is a perfect example of how the £1 billion annual budget of the National Institute of Health Research is benefitting patients. By bringing together the Medical Research Council and the NIHR, this project is supporting ground-breaking studies looking at the genetics and new treatments of Inflammatory Bowel Disease that have the potential to make a real difference to patients’ lives.”
The IBD BioResource will undertake a major new genetic analysis based on genome sequencing, and will keep a database of 25,000 patients with IBD. These participants will supply a small sample of blood and agree to be re-contacted for future research studies based on their known genetic and clinical details.
These ‘stage 2’ studies can be run by any investigator in the UK from science or industry with an approved research project to look at IBD. The studies might involve anything from completing a survey, providing fresh samples of blood or even participating in a trial of a new treatment.
By starting with groups of patients selected for having similar patterns of IBD and similar genetic make-up, investigators will more easily make sense of both the results of their immunological research and treatment response data. Once they understand these things they can look to create ‘personalised medicine’, targeting specific treatments at patients they know who are likely to benefit.
To join the IBD BioResource all patients need to do is supply a sample of blood and fill in a questionnaire. They will be contacted regarding future IBD research projects for which they meet inclusion criteria and given all the information at that stage. They then decide study by study if they would like to participate or not.
A website is available, which gives more information on the IBD BioResource. It explains how people with Crohn’s disease or Ulcerative Colitis can sign up and how clinicians and investigators can get involved and access the IBD BioResource.
The IBD website www.ibdbioresource.nihr.ac.uk
Email for more details at: firstname.lastname@example.org