This study has been designed with the help of patient advisors living with Crohn’s and Colitis from across the UK. They, as well as our group of researchers believe that participating in the Open-IBD research study has some immediate benefits for you if you are diagnosed with Crohn’s or Colitis.
By taking part in this study you will have regular face to face reviews with experts highly experienced in the management of Crohn’s and Colitis. Dedicated research clinics and/or clinic appointments for this research may mean you will be seen and reach a diagnosis faster than in standard NHS practice. These study reviews can provide you with access to support, knowledge and expertise at regular time points following diagnosis. Regular catch-ups with the research team can provide a level of reassurance and may provide more frequent opportunities to ask questions about your condition then would be routinely experienced in standard care.
In addition, if diagnosed with Crohn’s or Colitis, the implementation of regular tests which form part of the research study will provide information about how you are responding to any treatments and potentially identify problems early. This includes a colonoscopy assessment at 12 months after diagnosis to check on the health of your intestine, to check that you are responding to treatment and decide if any further changes to your treatment should be made.
The longer-term benefits of the Open-IBD study are for the wider Crohn’s and Colitis community rather than you personally. This study will improve our understanding of the links between gut microbes, genes, diet and Crohn’s and Colitis. It also aims to identify how these factors influence an individual’s response to treatment. Currently, it can take time to find the right treatment for patients, with medication changing multiple times in a trial-and-error approach. This study seeks to identify, at the time of diagnosis, which patients are likely to develop more complicated forms of the disease and to provide them with the most effective treatments early on. If successful our patient advisors think this could be transformative to the future care of patients following study completion.
The study involves collection of blood and tissue samples. As with any medical procedure these carry small risks, but we minimise these by having them carried out by qualified and trained hospital staff.
These procedures are standard practice whether you decide to join the study or not. Blood sampling can cause discomfort and may cause a small bruise. Tissue samples (biopsies) are taken as part of your routine clinical care and at the same time some additional samples would be taken and used for the study. When a biopsy is taken, there is a small risk of bleeding (1 in 150 chance) and there is a very small risk that the procedure could create a hole in the bowel (perforation) (1 in 1500 chance).
All risks will be discussed with you before any samples are taken in line with standard NHS procedures.