Milestone HES reports have been sent to all Registry sites that have submitted data to NHS Digital.

A key objective of the UK IBD Registry is to make information work for patients, their clinical teams and the NHS. These reports represent an exciting milestone in the realisation of this ambition; they use routinely collected hospital episode statistics (HES) data collected in England between 2011 and 2016 to supplement the clinical data collected by sites, and benchmark individual site data against other English NHS trusts.

Summary of national level data from HES reports.

click here to continue reading

Novel algorithms developed by the University of Liverpool’s Biostatistics Unit, led by Keith Bodger, have allowed the data to be interrogated in ways that recognise the diversity of coding patterns associated with unplanned care. In addition to analysing admissions with a primary diagnosis of ulcerative colitis or Crohn’s disease, the team has captured the substantial additional burden of unplanned admissions for IBD patients where primary diagnoses relate to symptoms, signs, complications or associated conditions.  They have tracked IBD patient journeys over time to analyse key end-points such as surgery and mortality.


Fraser Cummings and Stuart Bloom commented: “We have to acknowledge and thank Crohn’s and Colitis UK who have supported this superb work by the University of Liverpool team through a health services development award.”


Our plans for the next IBD Registry HES report will focus on Crohn’s disease and introduce ‘linkage’ between locally-collected registry data and HES data for patients on biological therapies. We hope you find the content of this report interesting and look forward to your comments and suggestions for the next iteration.


Please email [email protected] with questions, comments or suggestions on the HES reports.


23rd November 2017

The UK IBD Registry

The Inflammatory Bowel Disease (IBD) Registry is the first UK-wide collection of anonymised adult and paediatric IBD data for prospective audit and research. Routine clinical information entered once into an electronic patient record at the point of care, can be used to meet many different needs.



The Registry’s main focus for 2016/17 is on biologics, and the aim is to develop a near-complete UK Register of IBD patients on biologics by the end of 2017. Being part of the Registry will give IBD teams:

  • Local data to manage their biologics patients and IBD service more effectively
  • The chance to be part of a national audit of the safety and appropriate use of biologics and biosimilars

The IBD Registry Biologics Audit is part of NHS England’s Quality Accounts 2017/18

Find out more about...


Latest News

Milestone HES reports released!

Data and reporting   Milestone HES reports sent to sites this week Earlier this week, HES reports were sent to all Registry sites that have submitted data to NHS Digital, fulfilling a long-held Registry aim to make information work better for patients, clinical teams...

read more

2017 Review

2017 has been a pivotal year in the development of the IBD Registry. Continued hard work from IBD teams across the country has resulted in 33,321 patient records being uploaded by 53 sites. Thanks to an idea from our Industry Working Group, we set up a data entry...

read more

HES reports

The IBD Registry team have realised a long-held ambition to use routinely collected hospital episode statistics (HES) data to supplement the clinical data collected by sites, in a ground-breaking initiative led by Keith Bodger

read more

Richard Driscoll 1950-2017

It is with great regret and sadness that we have to inform you of the untimely passing of our friend and colleague Richard Driscoll. Richard passed away on the morning of Saturday 21st October, following a cardiac arrest last week. He is survived by his wife Aviva,...

read more

Patient Records Pass 30,000

This month the IBD Registry achieved two participation milestones: we moved past 30,000 patient records (up to 31,614) and now have 51 sites submitting data to the Registry.

read more

Audit & Registry – where next?

The UK IBD Registry: introduction

Driving excellence