How to get involved

For hospital IBD teams

If you are new to the IBD Registry, this page outlines the steps to take to start sharing your data with us.

Please note: we have recently moved our database from NHS Digital to our own secure data platform held at AIMES. This means IBD teams that have previously contributed data to the Registry may also need to take some of the steps below to continue sharing data with us.

Step 1: Tell us which clinical system you use

Our ethos is always to use clinical data already captured. Please contact us to tell us which systems or processes are already in use in your Trust.

 

Step 2: Talk to your Information Governance team

All the data that you share with us, and we share back to you, is carefully governed by data sharing agreements. These have been designed for NHS Trusts and are being used by many other IBD services. We are happy to work directly with your Information Governance team.

 

Step 3: Sign up to the IBD Registry Data Access Portal

The final step is letting us know who the clinical contact in your team should be. You can use our online form to register members of your team who will use our Data Access Portal for submitting data to the Registry.

If you have recently signed up to our new Data Access Portal, or are about to do so, we have produced a short video guide that IBD teams can use anytime to remind yourself of the data submission process, or alternatively you can download our short guide to uploading data. We also have further guidance on preparing your files to comply with the national data opt-out.

 

Step 4: Tell your patients about the IBD Registry and how to consent

We are actively campaigning to encourage more people with IBD to join the Registry and consent to their data being used for clinical quality improvement, and for research. We hope you will let your patients know about the Registry and how to join, as this will help us to use the data you submit to its greatest potential. We can give you our resources pack to support you in doing this.