Giving your consent
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 can also give us permission to use your data for this purpose, using our online consent form. This form also includes an option to allow us to use your data for research into IBD. You can also tell us if you want to be contacted about new studies that are relevant to you and you may want to take part in. This can make it easier for researchers to recruit the participants they need.
You can find out more about how to join the Registry here.
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. You can contact us or talk to your doctor or nurse about any concerns you have.
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 have a specific concern or question that we might be able to help with, please let us know using our feedback form. Or, if you still want to withdraw from the Registry, you can do so by following the steps below.
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.
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.
As part of this process, we will contact your hospital to tell them to stop sharing data from your health record with us.
How can I access the information that the Registry holds about me?
Please contact us for more information.