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?

Please select the hospital where you receive care for your IBD (including Crohn’s disease, ulcerative colitis and other forms of IBD). If you attend more than one hospital for your IBD, choose the one you visit the most.

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?

When you join the IBD Registry, please tell us which hospital is currently providing your IBD care right now.  If you are going to change hospitals, you can login to your My IBD Registry page to update your hospital details once you have changed.

Do I need to keep a copy of my consent form?

It’s up to you. When you join the IBD Registry online, you have the option to download and save or print your signed consent form. You will need to keep this safe, especially if you are using a computer that is shared with other people. We keep a copy of your form in our records so that it is safely stored.

Do I need to show a copy of my consent form to my hospital?

No – we send this directly to the hospital that provides your care. You do not need to do this.

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?

The online signature works best on smartphones and tablets with a touchscreen. You will need to use your finger.  If you have a screen protector on, you may need to press a bit harder. It can be a bit more difficult on laptops or PCs, where you will need to use a mouse.

I'm currently abroad. Why can't I access the online form?

Our online form cannot be accessed from abroad. This is because you must be living in the UK to join the IBD Registry. Please try accessing the form once you are back.

Updating your details

How do I change my personal details?

You can change your last name, preferred name, hospital, postal address, email address or phone number by logging into your My IBD Registry page. You can find a link to your page in the confirmation email we sent to you when you joined.

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?

You can change your consent preferences by logging into your My IBD Registry page. You can find a link to your page in the confirmation email we sent to you when you joined.

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.

I'm having trouble logging in. Can you help?

You will need to provide your date of birth and last name to login to your My IBD Registry page. Your date of birth must be in day-month-year format. If you have changed your last name and updated your contact details, please use the most recent name you provided.

Other FAQs

Can I use your online feedback form to send a message to my hospital?

No – your hospital will not have access to any messages that you send using this form. Please only use it to let us know about any suggestions or comments you have. This helps us to improve our systems and information for people with IBD. Please note that the IBD Registry cannot answer questions about your health or healthcare. Please speak to your IBD doctor or nurse if you need medical advice.
  If you have any other questions, please contact us.