Quality Accounts

Why join the Registry?

 

Be part of the national movement adding data in order to understand IBD

  • Track and measure improvements to patient care and treatment
  • Fulfill the IBD Standard for data submission to the IBD Registry
  • Build the picture of biologics usage nationally
  • Contribute to an IBD dataset reaching research-readiness
  • Add to the knowledgebase about IBD

Benefits of participation

Quarterly report analysing your site’s submitted data in comparison to national data, including:

  • demographics
  • disease phenotype
  • consent levels
  • biologics usage

Additionally, we produce for each participating site a special annual report showcasing the results of linking and analysing together the HES (Hospital Episodes Statistics) data with the national IBD data.

How to join us!

 

Contact the Registry team to get set-up and started!

 

3 key steps:

  1. Decide which system will you use for data collection
  2. Approach your Caldicott Guardian for data sharing approval
  3. Approach your local IT team for support (if required)
  4. Register with NHS Digital (for England and Wales) for data upload

Plus

  • Think about a Clinical Champion who can drive local Registry implementation
  • Plan your team approach to data capture
  • Set your own realistic data submission goals

Our Journey

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IBD Registry Ltd is a not-for-profit company limited by guarantee - Company Number 11197749.
Our Registered Address is 3 St Andrews Place, Regent’s Park, London NW1 4LB. VAT Number 291683766.