The Lothian IBD Registry brings together records from approximately 10,000 people with IBD cared for in NHS Lothian over more than twenty years. This is a historical research population, rather than a count of everyone currently living with IBD in the region.
Establishing the population
The original prevalence study searched multiple healthcare sources and checked diagnoses against clinical records. It identified 7,035 people alive and living with IBD in Lothian on 31 August 2018: an observed prevalence of 784 per 100,000, reported as about one in 125. Allowing for potentially missed cases increased the estimate to 832 per 100,000. The study projected prevalence reaching approximately 1% by 2028; that was a forecast, not a current measurement.
Following care and outcomes
Repeated biomarkers, prescribing records and clinical outcomes allow researchers to study disease over time. Published analyses have described inflammatory trajectories, emergency admissions and changing patterns of treatment and surgery.
The five-year risk of first Crohn’s disease surgery fell from 20.4% in the earliest diagnosis cohort to 13.0% in the latest. Annual colectomy rates in ulcerative colitis fell from 2.48 to 0.22 per 100 patients between 2004 and 2023, alongside increased advanced therapy prescribing. These observational trends do not establish how much of the improvement was caused by treatment.
Developing the next questions
Linkage with DataLoch is being developed to support research across healthcare datasets. Current questions concern disease course, wider health, monitoring and healthcare use. The aim is to understand outcomes across a whole population and identify where future care could make a difference.