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IBD BioResource: an open-access platform of 25 000 patients to accelerate research in Crohn’s and Colitis
  1. Miles Parkes
  2. On behalf of the IBD BioResource Investigators
    1. Correspondence to Dr Miles Parkes, Gastroenterology Unit, Addenbrooke’s Hospital, Cambridge CB2 2QQ, UK; miles.parkes{at}addenbrookes.nhs.uk

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    Give us the tools and we will finish the job

    -Winston Churchill

    An alliance of clinicians, academics, research nurses, funders, coordinators, programmers and, most importantly, patients has come together in the UK to deliver a powerful new platform to accelerate Crohn’s and Colitis research—the inflammatory bowel disease (IBD) BioResource. As part of the National Institute for Health Research (NIHR) BioResource for translational research, 25 000 patients in over 90 hospitals UK-wide have signed up since we launched in January 2016 (figure 1). All have detailed phenotypes databased including Montreal classification,1 treatment response history (updated annually), surgical history and comorbidities (see IBD BioResource panel descriptive, Clinical data collection sheet and Health and Lifestyle questionnaire). Serum, plasma and DNA samples are banked; and genome-wide genetic profiling undertaken. Participants’ data and samples can be studied, and they themselves surveyed or recalled for resampling or downstream studies (see figure 2). Critically, such studies can be led by any UK or overseas investigator whether from the worlds of clinical research, pharmacovigilance, science or industry.

    Figure 1

    IBD BioResource recruitment in over 90 hospitals in the UK. IBD, inflammatory bowel disease.

    Figure 2

    How the IBD BioResource works. HES, Hospital Episode Statistics; HSCN, Health Social Care Network; IBD, inflammatory bowel disease; NHS, National Health Service.

    What is the IBD BioResource for

    A key motivation is to leverage recent genetics advances, and by understanding the functional impact of IBD-associated gene variants accelerate translation of the new knowledge for clinical benefit. Beyond this, it is increasingly evident that the IBD BioResource can facilitate a wide spectrum of research. This might include anything from mining existing data or samples or surveying the cohort regarding outcomes of newly licensed treatments, to pharmacogenetic research. It could also be used to expedite recruitment to intervention studies, including experimental medicine and conventional drug trials.

    Gene discovery in Crohn’s disease and ulcerative colitis has placed …

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