Please visit this page to search for NIHR / IBD BioResource approved studies based on clinical speciality, type of study (participant recall, online, samples and data, data only) and researcher type.
Examples of studies the NIHR / IBD BioResource has facilitated
Access to data only
Prof Miles Parkes, Addenbrookes Hospital: Thiopurine monotherapy is effective in ulcerative colitis but significantly less so in Crohn’s disease: long-term outcomes for 11 928 patients in the UK inflammatory bowel disease bioresource
Data from the IBD BioResource were used to understand how effective thiopurine (azathioprine and mercaptopurine) treatment is in Crohn’s and Colitis. This study looked at thiopurine treatment alone (not used in combination with other medicines) – known as monotherapy. Thiopurine monotherapy was found to be effective in maintaining long-term remission in Colitis but it appeared to be less effective in Crohn’s disease, particularly in people who have perianal Crohn’s. Combination of thiopurine with biological therapy is more likely to be successful in people who have Crohn’s disease.
Prof Miles Parkes: “Real world data from people participating in the IBD BioResource has played a key part in understanding the role of azathioprine and mercaptopurine in the treatment of IBD. These drugs are clearly very effective in ulcerative colitis, but rather less so in Crohn’s disease where other, newer treatments may need to be added in”
This study has now been published and the full article can be accessed here
Access to data and samples
Prof Graham Lord, University of Manchester: A Crohn’s Disease-associated IL2RA Enhancer Variant Determines the Balance of T Cell Immunity by Regulating Responsiveness to IL-2 Signalling
This study aimed to investigate the impact of a genetic change on the way immune cells called effector (Teff) and regulatory (Treg) T cells ‘talk’ to each other. By studying Teff and Treg cells that were isolated from blood samples provided by volunteers, the researchers found that in individuals with the genetic change, the Teff were more sensitive to immune signalling. The results of this study show a shift in the balance between Treg/Teffs, leading to a more ‘aggressive’ Teff in these subjects and may pave the way to become a target for personalised treatment in Crohn’s disease.
Prof Graham Lord: “Our study is one of the first to link a common genetic change which is associated with IBD to a biological change in immune cells. We hope that this work will advance progress towards a personalised treatment approach for subjects carrying the genetic change. We are hugely grateful for the support of the NIHR IBD Bioresource in identifying and recruiting patients with and without the genetic change. Without the assistance of the staff and access to their IBD BioResource panel, we would not have been able to recruit patients from the rarest genetic type – those who carry two copies of the genetic change. The IBD Bioresource were also able to provide us with linked clinical data for the participants, so that we could examine whether the genetic change is linked to differences in the type and behaviour of IBD in patients”
This study has now been published and the full article can be accessed here
Recall study
Prof Ailsa Hart, St Mark’s Hospital: Crohn’s Anal Fistula Quality of Life Scale (CAF-QoL)
Perianal fistulas are often difficult to treat and can have a major impact on various aspects of life and its quality. The status of perianal fistulas and whether there is response to treatment is currently assessed by the Perianal Disease Activity Index (PDAI). However, PDAI was originally developed without input from patients living with the condition, and is completed by the clinician. This study therefore aimed to develop a new patient-centred quality of life assessment scale with the help of people living in the community with Crohn’s disease-related perianal fistulas. Data from 211 patients enabled the development of a final 28-item questionnaire and contributed to establishing the CAF-QoL scale. It is now ready for use as a Patient Reported Outcome Measure (PROM) in research and clinical practice and complements objective clinical evaluation of fistula by capturing impact on the patient.
Prof Ailsa Hart: “The IBD BioResource is a very attractive and cutting-edge resource of patients with IBD, from which subjects meeting inclusion criteria for approved downstream functional and clinical studies can be identified and recalled for scientific and clinical research. The IBD BioResource was an integral part of our study demonstrating a new PROM, Crohn’s Anal Fistula Quality of Life Scale (CAF-QoL). It required ‘test-retest’ of questionnaires with a specific time frame in between, which meant lot of coordination of correspondences and communication between patients with the study team, with significant contribution from the BioResource. With the help of the team at NIHR BioResource, this provided the numbers of participants required and a smooth and timely communication between them”.
This study has now been published and the full article can be accessed here
