The IBD Registry is closing current activities by Easter 2024, and is in discussions through Spring 2024 about possible transition to an NHS organisation. See our Closure Announcement, Data Transfer Update, Closure FAQs and Achievements. 

Giving your consent

We collect consent using our consent form and patient information leaflet (you can read this separately or as part of the consent form). We are no longer accepting new consents.

If you have consented to join the IBD Registry prior to 30 January 2024:

We should have contacted you about the closure of the IBD Registry and what it might mean to you. We have created a series of FAQs surrounding the closure and your data.

Giving us permission to use your data

All data that comes from the NHS must have permission to leave the hospital. The Secretary of State for Health’s Confidentiality Advisory Group has given the IBD Registry special permission to collect information about the treatment and care of people using IBD hospital services. This is collected from NHS hospitals and can only be used in ways that can help improve healthcare services for people with IBD.

However, if you have IBD, you could have given us permission to use your data for this purpose, using our online consent form (no longer available).

What if I don’t want my data to be used?

We hope that you will allow your data to be used by the Registry to help improve treatment and care for people with IBD in the UK. If you decide you do not want your data to be shared with the Registry, your decision will not affect the healthcare you receive in any way.

The NHS gives you the option to stop your health data being sent to any external organisation without your consent.  If you have chosen this option, but you have also joined the IBD Registry, your data will still be sent to us unless you withdraw your consent. You can withdraw your consent from the Registry at any time (see below).

Can I change my mind at a later date?

If you decide to join the IBD Registry, you are free to withdraw at any time and you don’t have to give a reason.

If you joined the Registry online, you can use the personalised link that we sent to your email address when you joined to withdraw your consent. This option is only available until Early March 2024 due to the closure of the IBD Registry.

If you used a paper form to sign up, you can contact us to withdraw your consent. We will process your withdrawal within a maximum of 1 month.

Notice regarding IBD Registry Closure: Please read our Closure FAQs to find out more about your data rights during this period.

How can I access the information that the Registry holds about me?

Please submit a data access request using our Data Subjects Rights Portal.