Writing the next decade of IBD care.

Longitudinal modelling and disease trajectory — inflammation, exposure and risk over time.

Longitude maps disease in motion. This programme uses longitudinal faecal calprotectin, CRP and multimodal biomarkers to understand inflammatory burden across time, not just at single clinic visits.

Focus

IBD activity changes over weeks, months and years. By studying repeated measures and linked clinical data, Longitude aims to describe trajectories of inflammation, identify patterns of risk and understand how disease burden accumulates or resolves over time.

Why it matters

Better longitudinal modelling can help clinical teams move from reactive care to earlier recognition of change. The goal is to support decisions that account for each patient’s disease course, biomarker history and future risk.

Proactive intelligence and observability — the algorithmic layer behind SENTINEL.

Vantage is about seeing risk earlier. This programme defines how to observe an IBD population across clinical states and builds the algorithmic layer that helps clinical teams identify what needs attention sooner.

Focus

IBD services care for populations of patients whose risk changes continuously. Vantage develops the observability, monitoring and prioritisation methods needed to understand those changes across routine care, flare, remission, treatment transition and follow-up.

Why it matters

Earlier visibility creates more opportunities to intervene before disease activity escalates. Vantage underpins the proactive intelligence behind SENTINEL, helping turn complex clinical data into timely signals for care teams.

Diet, microbiome, ageing, comorbidity, women's health and quality of life across the disease.

Continuum focuses on whole-person, whole-course care. This programme studies diet, lifestyle, microbiome, genetics, comorbidity, ageing, women’s health and quality of life across the full arc of disease.

Focus

IBD is shaped by more than inflammation alone. Continuum brings together deep phenotyping through PREdiCCt, linked data and broader measures of health to understand how biological, environmental and lived-experience factors influence outcomes over time.

Why it matters

Understanding the whole person can support more personalised care. Continuum aims to identify the factors that affect disease course, treatment response and quality of life so that care can better reflect patients’ needs across every stage of IBD.

Patient partnership, navigation, education and community — the public voice of Edinburgh IBD.

Cairn is built with patients. This programme ensures that patients help shape research priorities, digital tools, trial design and how proactive monitoring should work in practice.

Focus

Proactive IBD care needs to be clinically useful and acceptable to the people it is designed to support. Cairn brings patient perspectives into the development of monitoring approaches, communication, education and trial delivery.

Why it matters

Patient partnership helps make research more relevant and implementation more practical. Cairn supports a model of care where tools, priorities and workflows are shaped by lived experience as well as clinical evidence.

~10,000 patients, 20+ years, integrated with DataLoch — the engine for real-time risk and outcomes.

The Lothian IBD Registry represents one of the most comprehensive electronic health record (EHR) cohorts for inflammatory bowel disease research in the UK.

Registry Overview

With approximately 10,000 patients, this longitudinal cohort provides a rich data source for pharmaco-epidemiological research, biomarker discovery, and survival analysis. The registry is fully integrated with DataLoch, the regional health data research platform.

Research Focus Areas

Pharmaco-epidemiology

We analyse real-world medication use patterns, treatment effectiveness, and adverse event profiles across the IBD patient population. This research informs evidence-based treatment guidelines and safety protocols.

Biomarker Modelling

By leveraging the extensive biomarker data available in the EHR, we develop predictive models to identify patients at risk for complications, treatment failure, or disease progression.

Survival Analysis

Long-term follow-up data enables sophisticated survival analyses, examining factors that influence disease outcomes, surgery rates, and long-term prognosis.

DataLoch Integration

Integration with DataLoch provides enhanced capabilities for:

• Cross-linking healthcare datasets
• Population-level health analytics
• Quality improvement initiatives
• Health services research

Impact

This registry serves as a critical resource for understanding IBD in real-world clinical settings, informing both clinical practice and health policy within NHS Lothian and beyond.

UK-wide prospective cohort — 2,629 participants, 49 sites — with deep dietary, lifestyle, microbiome and biomarker phenotyping.

PREdiCCt is a groundbreaking UK-wide longitudinal cohort study designed to understand the complex interplay between diet, lifestyle, and the gut microbiome in inflammatory bowel disease (IBD).

Study Overview

This comprehensive research initiative aims to identify the environmental and dietary triggers that influence disease flare in patients with IBD. By following a large cohort of patients over time, we are collecting detailed data on dietary habits, lifestyle factors, and microbiome composition.

Key Objectives

• Investigate the relationship between dietary patterns and disease activity
• Examine how lifestyle factors contribute to disease flare
• Analyse the role of the gut microbiome in IBD progression
• Develop predictive models for disease flare based on environmental and dietary factors

Impact

The findings from PREdiCCt will help inform personalised dietary and lifestyle interventions for IBD patients, potentially reducing disease flare and improving quality of life.

Commercial and non-commercial trials — new molecules, combinations, head-to-head, strategy and intestinal ultrasound studies.

Our trials portfolio gives people with inflammatory bowel disease opportunities to take part in studies that test new treatments, compare established approaches and improve how care is delivered in routine practice.

What this portfolio covers

We run a mix of commercial and non-commercial studies across IBD. This includes new molecules, treatment combinations, head-to-head comparisons, strategy studies and projects using tools such as intestinal ultrasound to understand disease activity more accurately.

Key Features

• Interventional and observational research: We support both trials of new therapies and studies that follow patients over time.
• Broad clinical relevance: Studies are designed to answer practical questions about which treatments work best, for whom, and at what stage of disease.
• Embedded in specialist care: Recruitment and follow-up are closely linked to the NHS Lothian IBD service, helping research stay connected to real clinical need.
• Platform for future innovation: Trial participation helps build the evidence base needed for better treatment pathways and more proactive care.

Why trials matter

Clinical trials and research studies are how better IBD care is built: by testing promising therapies, refining monitoring strategies and learning which approaches deliver the best outcomes for patients. Our aim is not only to offer access to research, but to use that research to shape everyday care in the years ahead.