Colorectal THRIVE

Some research groups have great data. Some have great clinicians, or great methods, or a strong patient voice. It’s rare to find all of them in one team, inside one clinical service, working on the same questions. That’s what we’ve built in Edinburgh, and today it has a proper home: edinburghibd.com. The people. Consultant gastroenterologists, research nurses, data scientists, laboratory scientists, PhD students and clinical and visiting fellows, embedded alongside the NHS Lothian IBD service, with patients as partners. The data. The Lothian IBD Registry: more than 20 years of real-world records on about 10,000 people, now being linked through DataLoch. PREdiCCt: 2,629 people across 47 UK centres, with deep dietary, lifestyle, microbiome and biomarker data. Open-source tools such as landmaRk for dynamic risk prediction. The record. 166 publications. Ten trials and studies recruiting now. Work that has mapped how inflammation behaves over time, shown that calprotectin predicts flares in people who feel well, and documented colectomy for ulcerative colitis in Lothian falling more than tenfold between 2004 and 2023. The ideas. The graphic is where it starts. IBD is heterogeneous, dynamic, unpredictable and lifelong: four of the courses inflammation can take after diagnosis, from our trajectory research in Lothian and Denmark. Care should be built around the whole of that course, not single visits. That thinking runs through our four programmes, Longitude, Vantage, Continuum and Cairn, and into SENTINEL, our flagship platform for clinician-supervised, proactive care, now preparing for a feasibility study. We call it writing the next decade of IBD care. If you’d like to be part of it, as a patient partner, a collaborator, a fellow or a supporter, the website is the place to start. Take a look and let me know what you think: edinburghibd.com/ @EdinUni_IGC

The first part of my new series on advanced combo therapy for IBD is posted on Atomic IBD. Have a read and let me know what you think.