Thank you for your interest in our study and a big thank you to everyone taking part, as well as our NHS study teams.
Here is our latest news:
Our aim is to enrol 2,000 participants by December 2028.
As of 1st July 2026, we have 495 participants taking part in the study.
This means we are ahead of our target, thanks to the excellent work happening at each study centre and the support of everyone taking part.
To date, we have also collected 587 stool samples and 856 blood samples.
Participants have also completed study questionnaires at multiple timepoints, including Baseline, Month 3, Month 6, Month 9 and Month 12.
Where the Study Is Taking Place:
We are currently recruiting at seven NHS sites, including:
Barts Health NHS Trust
Cambridge University Hospitals NHS Foundation Trust
NHS Lothian (The Western General Hospital)
Royal Devon University Healthcare NHS Foundation Trust
Guy’s and St Thomas’ NHS Foundation Trust
The Newcastle upon Tyne Hospitals NHS Foundation Trust
St George’s University Hospitals NHS Foundation Trust
Who Is Taking Part?
There are two groups (cohorts) in this study:
IBD Cohort – people living with Crohn’s disease or Ulcerative Colitis.
Participants in the IBD cohort attend in‑hospital study visits every three months for the first two years following their baseline visit.
After the two‑year visit schedule is completed, no further hospital attendance is required for study purposes.
During Years 3 and 4, hospital staff continue to support the study by reviewing participants’ medical records and entering the relevant information into the study database. This part of the study involves only hospital teams and does not require participant appointments.
Non‑IBD Cohort – people who do not have IBD
Participants in the non‑IBD cohort attend only the baseline visit.
Once a non‑IBD diagnosis is confirmed, no further study‑related hospital visits are required.
Hospital staff then review medical records and enter study data into the database up to Year 4, without any additional input needed from participants.
At the moment, we have roughly equal numbers in each cohort.
Within the IBD cohort, more participants have Crohn’s disease than Ulcerative Colitis.
What Stage Are Participants At?
As the study is still in the recruitment phase, participants are currently at different stages:
Some are attending their baseline (first) visit
Others are already at their month 12 visit
Sample Collection and Laboratory Work:
Throughout the study, we collect different types of samples, including:
Blood samples
Biopsies
Stool samples
These are taken at various points, depending on where each participant is in the study schedule and study arm.
Our central laboratories are currently very busy processing and analysing these samples, and everything is progressing well.
Study Oversight:
Several important study activities are underway to make sure everything runs smoothly and safely:
Study monitoring is progressing well across all sites.
Our Patient Group wrote a paper titled ‘Patient and public involvement and engagement: Who, why, when and how to get it right’. This exciting paper has been accepted for publication in Frontline Gastroenterology at: Patient and public involvement and engagement in research: who, why, when and how to get it right
Our Clinical Management Group continues to meet regularly.
The Clinical Management Group is made up of clinicians, research staff and sponsor representatives, and is responsible for planning, coordinating, and delivering the clinical aspects of the Open‑IBD study. It meets to review progress, resolve operational issues, share information with the wider team, and carry out decisions made by the Scientific Oversight Committee.
Our second Scientific Oversight Committee meeting took place on 09/06/2026.
This Committee will ensure the project is run to high scientific and ethical standard and oversees how samples and data are used to answer key questions in IBD research. Two clinical research fellows proposed research projects to look at ‘Using symptoms, blood tests and gut bacteria to identify people most likely to have inflammatory bowel disease’ and ‘Intestinal Ultrasound: Understanding How Disease Changes Over Time’. Both projects were reviewed and approved by the committee.·
Data review/analysis: Our first database download was completed in February 2026, and anonymised data was shared with our research partners the following month. This is an important milestone that will help us identify where we need to focus our efforts to ensure the study data is as complete and high quality as possible, supporting robust and reliable research findings.
Thank You!
We are grateful to everyone who is taking part and to all the NHS teams involved. Your contribution is vital, and we will continue to share updates as the study progresses.