Joining the IBD Registry

Why do we need an IBD Registry?

Inflammatory bowel disease (IBD) includes ulcerative colitis, Crohn’s disease, and some rarer forms of the condition. IBD causes inflammation of the digestive system (also known as the gastrointestinal tract or gut), and may need treatment with medication and surgery, or a combination of both.

There are an estimated 500,000 people in the UK with IBD. By joining the IBD Registry and allowing your data to be shared with us, you can help us bring together information about the treatment and care of thousands of people with IBD. This can help to inform doctors, nurses and researchers about how people are affected by IBD and where improvements to treatment and care can be made. Collecting this data through a national IBD Registry means the information can be processed safely and securely, and only used in a responsible way.

Inflammatory bowel diseases are long-term conditions. This means collecting information about how people are affected over time is important. Sharing your data with the Registry can also help to measure the quality of healthcare that people with IBD receive and the impact of new treatments. This vital information can reveal how different IBD services across the UK compare, and also support new research into IBD.

You can read more about quality of care projects and research projects that the IBD Registry is involved in.

 

Am I eligible to join?

You must have a confirmed diagnosis of Crohn’s disease, ulcerative colitis, IBD unclassified or another type of IBD to join the IBD Registry. This is so our data can be useful for hospital teams and researchers. A confirmed diagnosis is where your doctor has confirmed that you have IBD, and which type it is.

You can ask your doctor or nurse about your diagnosis. If you are waiting for a diagnosis, you can join the Registry as soon as your diagnosis is confirmed.  If you have IBS (irritable bowel syndrome), this is different from IBD, and you won’t be able to join the IBD Registry.

You must also live in the UK (not including the Channel Islands and Isle of Man). You may not be able to access our online form if you are abroad.

We know that IBD affects people of all ages. Although our consent form can only be completed by adults right now, 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.

Joining the IBD Registry is entirely voluntary, and you can change your mind at any time.

 

How do I join?

The easiest way to join is to use our online form. You will need to provide some personal details, including your name, NHS number and date of birth. This is so we can check that you are eligible to join the Registry and your hospital can identify you before sharing any data with us. You can also tell us how you would like us to use your data. You can read more about giving us 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 our 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 to us by post. You will need to read our Patient Information Leaflet first. You can ask someone to download these for you. Or you can contact us and we will post a form to you.

You can read our FAQs about joining the IBD Registry here.

If you experience any technical issues with our online form, please let us know using our feedback form or contact us.

 

How we collect and use your data

We can collect information about your diagnosis, treatment and care from your hospital team, and from you directly. We make sure that we keep your data safe, and only use it responsibly to help improve the lives of people with IBD. You can read more about how we protect your data here.

We then put all this data together to create a useful source of information for IBD hospital teams and researchers.

We collect and analyse the data on an ongoing basis. This means we can provide regular reports for each hospital that works with us. These reports give them an understanding of how their IBD service is performing, as well as the latest information on IBD treatment and care in the UK today.

Approved researchers can also apply to use de-identified data for specific studies into IBD. Visit our Analysis and Research page for more information about these projects.

For more information about how we collect and use your data, read our Patient Information Leaflet.

If you are a clinician and would know more about how the Registry can help you, please see our clinical pages.

 

You can help shape our work

We work closely with Crohn’s & Colitis UK to make sure that the voices of people with IBD are represented in our work. We also ask our Patient Advisory Group for their views on what matters to patients, such as our information for people with IBD, and the types of research we provide data for.

You can join our mailing list for regular updates on the IBD Registry and how you can get involved. You can also follow us on Twitter and LinkedIn.