Edinburgh IBD — Support our research

Inflammatory bowel disease (IBD) does not wait for the next clinic appointment. Crohn’s disease and ulcerative colitis are lifelong immune diseases of the gut that can begin in childhood, adolescence or early adulthood, disrupt education, work, family life and mental health, and lead to hospital admission, surgery and permanent bowel damage. More than half a million people in the UK live with Crohn’s or Colitis; 25,000 more will be told they have it this year, many under 30; and today there is still no cure.

Yet IBD care is still too often forced to be reactive. A patient flares. Symptoms escalate. Tests come back. Treatment changes. By then, inflammation may already have done harm. One in four people waits more than a year for diagnosis, and one in seven adults with IBD is diagnosed during an emergency hospital admission.

Edinburgh IBD is building the next model of care: proactive, predictive and whole-person. We bring together clinic, data, discovery, trials and patient partnership to see disease earlier, understand where it is going and act with patients before opportunity is lost. Our flagship platform, SENTINEL, is turning that science into clinician-supervised intelligence for routine care.

With your support, Edinburgh can help move IBD from a disease we react to, to a disease we can anticipate, personalise and prevent from causing harm: built in Edinburgh, designed for IBD everywhere.

A unique route to prediction. We have more than two decades of linked real-world data on around 10,000 Lothian IBD patients through the Lothian IBD Registry, alongside PREdiCCt (a UK-wide cohort of 2,629 deeply phenotyped participants across 49 sites), connected through NHS Scotland’s DataLoch. This depth lets us study not just what IBD is today, but where it is going next.

A team built for translation. Clinicians, data scientists, laboratory scientists, research nurses and patients work in one programme, embedded alongside the NHS Lothian IBD service. That combination helps us move from signal, to model, to trial, to clinical decision more quickly and safely.

A platform for the next decade of care. SENTINEL is our flagship clinician-supervised AI platform for proactive IBD care. Around it sits our national cohorts, real-world data, laboratory discovery and clinical-trials portfolio (new molecules, combinations of advanced therapies, head-to-head and strategy trials), giving local patients access to tomorrow’s care and helping us build tools that can be deployed elsewhere.

Built with patients. Our work is shaped with patients, not simply done about them. Patient involvement helps us ask better questions, design tools people will trust, and make proactive monitoring feel like support rather than surveillance.

Your donations and fundraising could help us turn Edinburgh’s unique data and clinical expertise into a new model of IBD care — one that sees earlier, acts sooner and gives patients more time well.

Your support could help with:

Patient partnership: funding patient-and-public involvement sessions so patients help shape the research and tools built for them.

Research nursing: opening access to trials, new therapies and follow-up for local patients.

Data-science time: building and validating the predictive models behind proactive care.

Clinical fellowships: training the next generation of IBD clinicians and researchers.

Take on a challenge such as the Kiltwalk, a run or a cycle; hold an event; or mark a special occasion:

A lasting way to help future patients:

To discuss your donation or fundraising idea, please contact our philanthropy team at cmvm-philanthropy@ed.ac.uk or Professor Charlie Lees, programme lead.

Thank you for helping us write the next decade of IBD care.