Frequently asked questions
Joining the IBD Registry
I’ve previously consented to the IBD Registry. Is my consent still valid?
Thank you for previously consenting to the IBD Registry – we are very grateful for your support. We have recently updated our consent process – if you consented a long time ago or are unsure if you have done this or not, please use this new form to join the IBD Registry. If you joined the Registry this year (2022) you will already have used our new consent form and don’t have to do anything else. You can read more about giving your consent here.
I don't think my hospital is participating in the IBD Registry. Can I still join?
We can only receive information from your hospital health record if your hospital is working with us. However, you can still join the IBD Registry and share information about your health with us using the online survey on your My IBD Registry page. We’ll send you a personalised link to this page when you join. This data is still very valuable. We will also be able to request further information from your hospital if they start participating with the Registry.
Can children and young people join the IBD Registry?
We know that IBD affects people of all ages. Right now, our consent form can only be completed by adults, but we are working to make this available for young people and children too. We will share the latest updates on this in our quarterly newsletter.
Why can't I find my hospital on the online form?
Our online form includes all NHS hospitals that provide gastroenterology services. Try using the search box by typing in part of your hospital or Trust name. For example for St Mary’s, Isle of Wight, you could type in ‘Wight’, ‘Isle’ or ‘Mary’.
If you still can’t find your hospital, please let us know using our feedback form.
Hospitals outside the UK, including the Isle of Man and Channel Islands, are not listed.
I'm receiving care at more than one hospital. Which one should I select?
If you are being seen at a private hospital as well as an NHS hospital, please choose your NHS hospital. Currently we do not work with private hospitals.
I'm changing hospitals. Which one should I select?
Do I need to keep a copy of my consent form?
Do I need to show a copy of my consent form to my hospital?
Can I join the IBD Registry using a paper form?
Using our online form is the quickest way to join the IBD Registry and helps to keep costs down. If you are not able to access the form online, please contact us so we can provide you with a paper form. You will need to complete this form and post it back to us.
The online form is difficult to sign on my device. How do I do this?
I'm currently abroad. Why can't I access the online form?
Updating your details
How do I change my personal details?
If you joined the Registry using a paper form and need to change your details, please contact us. You will need to provide your NHS number and date of birth to change your details.
How do I change my consent preferences?
If you joined the Registry using a paper form and need to change your consent preferences, please contact us. You will need to provide your NHS number and date of birth to change your consent preferences.