Join the 
IBD Registry

for sites and clinical teams

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
  • Fulfil 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

    A 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!

    See our Summer 2019 newsletter for IBD clinical teams (PDF) here

    There are 4 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

    This is a short summary, our set up pack that we will send you has the full details.

    Plus

    • Think about a Clinical Champion who can drive local Registry implementation
    • Plan your team approach to data capture (not just one person!)
    • Set your own realistic data capture goals

    Our Journey

    Since we started in collecting data in May 2015, 75 sites have participated in the registry adding a total of over 51,000 patient records to date.

    We’ve sent out almost 500 local reports to sites in total based on our specialist biostatistic team analysis of the data submitted. In these years, we’ve added in Biologics as a specialist data set and also PROMS (Patient Reported Outcome Measures).

    We’ve listened to feedback from clinical teams and refined the KPIs to more accurately reflect realistic practice.

    We’re really proud of how many sites have joined in with the Registry.

    Although primarily in England with some sites in Wales, the Registry has clear aspirations to extend to Scotland and Northern Ireland to fully represent the UK.

    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.