Join the IBD Registry

The IBD Registry has been set up to allow all teams in the UK to participate. Because all hospital IT arrangements are slightly different, the specific tasks you’ll need to do to join the Registry will vary slightly by country and data entry system and you can find out more by clicking on the links below. The overall process for all sites is as follows:

  1. Identify a clinical champion to drive local Registry implementation and change management.
  2. Work with the IBD team and other colleagues to consider which data entry system (PMS, Web Tool, existing local system) will work best for you. It may be useful at this stage to contact:
    • The IT team to discuss resources and requirements
    • The Caldicott Guardian to agree information governance arrangements
  3. Choose your data entry system
  4. Register your interest and indicate which data entry system you plan to use.
  5. Receive the relevant starter pack and follow steps to local implementation
  6. Plan your team approach to data entry
  7. Register with NHS Digital to submit data to the IBD Registry

If you have any questions about joining the Registry, please contact the Registry support team on [email protected] or 0203 075 6150

IBD Registry Business case example – September 2016
Ideas and examples to help Clinical Leads to build the business case for Trust participation in the IBD Registry
Download here

Data Entry Options

The Registry team have worked with InfoFlex to develop an IBD Registry patient management system (PMS) as well as a Web Tool option, and teams can also use some existing local hospital systems (e.g. the EMIS Health Gastroenterology module, Ferring’s ‘Rotherham’ system or local hospital systems that have data fields matched with the IBD Registry data submission framework). The Registry systems have been designed to support best practice clinical care, and functionality includes GP letters and a printable summary of the consultation for the patient, as well as local reports for patient monitoring, reviewing against NICE guidance and activity reports.

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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...

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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...

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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

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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,...

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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.

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