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
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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