The IBD Registry collects health data from NHS hospitals and analyses this information to help improve services for people with inflammatory bowel disease (IBD). It also supports new research into these conditions. If you have Crohn’s disease, ulcerative colitis or another form of IBD, you can join the Registry to agree to your data being used to support this valuable resource.
How do I join?
The easiest way to join is to use the online form. You will need to provide some personal details, including your name, NHS number and date of birth. This is so they can check that you are eligible to join the Registry and we can identify you before sharing any data with us. You can also tell the IBD Registry how you would like us to use your data. You can read more about giving consent to use your data here.
Once you’ve joined, you’ll receive a personalised link that you can use to change your preferences on how your data is used, or to withdraw from the Registry, at any time. Please check your spam folder if you haven’t received this.
Using the online form is the quickest way to join the IBD Registry and helps keep costs down. This also lets you manage your details and consent options online in the future. If you do not have access to the internet you can complete and sign a paper form and return this by post. You will need to read the Patient Information Leaflet first. You can ask someone to download these for you. Or you can get in contact and a form will be posted to you.
You can read FAQs about joining the IBD Registry here.
Last Modified: 9:43am 20/04/2022