IBD Registry

Being part of the IBD Registry is one of the IBD Standards.

It brings benefits in terms of quality, safety and efficiency to clinical teams and hospitals.  Having better local data collected electronically helps teams to manage their IBD service more effectively.  Clinicians can access shared, current information at the point of care to inform treatment decisions.  Local reports facilitate audit and activity reporting, and work lists make safety monitoring and reviewing practice against standards and guidelines easy to do.

Aims and objectives of the IBD Registry

The IBD Registry provides the first ever UK-wide repository of anonymised IBD adult and paediatric patient data for prospective audit and research purposes.  Bringing this data together for the first time will:

• Drive continuous improvement in patient care and access to care across the UK
• Inform commissioning and service design
• Improve our understanding of long term outcomes
• Provide local, regional & national data in order to better define the pattern of ulcerative colitis and Crohn’s disease
• Support IBD research

Information for patients

Why should I want to be involved with the IBD Registry?

The IBD Registry has been set up to collect information about Inflammatory Bowel Disease (IBD) from across the UK.

Collecting this information will:

• Help hospitals to improve their care of people with colitis and Crohn’s disease
• Help improve our understanding of how people’s lives are affected by IBD
• Help the NHS design better IBD services
• Support research into IBD

By allowing your data to be collected by the Registry, you will be helping to shape the future care of people with IBD.  The more data we can collect, the better our understanding of the disease and the better our chances of learning how to improve patient care.

How safe is my personal information?

It is perfectly fine and important for all the hospital staff involved in your care to know your personal details.  However, once your data leaves the hospital, we have to make sure we safeguard your identity and ensure your details are properly protected.  We do that by working with the Health and Social Care Information Centre (HSCIC), which is an NHS-approved data ‘safe haven’.  They take the data direct from the hospital and extract some of the information to make it ‘pseudonymised’ (almost anonymous) before sending it to the IBD Registry.  This means that, by the time your information reaches the IBD Registry, we cannot identify who you are.

As part of this process, the HSCIC remove your NHS number and replace it with a unique IBD Registry number.  This means the Registry doesn’t know your NHS number and we can’t find it out, but the HSCIC does hold a safety file that keeps track of which IBD Registry number matches which NHS number. In this way, if there is a safety reason or if there is a research project for which you may be eligible, we can ask the HSCIC to get in touch with your doctors.

What does the IBD Registry do with my information?

The information held on the Registry will be analysed by clinicians and statisticians who are part of the Registry Team.  They will use the data to help us learn more about IBD care in the UK.

The team will look at how many people with IBD there are in different areas in the UK. We will also be able to learn how IBD affects different people and what treatments and services they receive.  This will help us understand more about the illness and help improve the quality of care for people with IBD.

We may also allow approved research projects to analyse the data under strict conditions.

Any reports that are published will be available at www.ibdregistry.org.uk

What do I need to do if I’m happy for my data to be used by the IBD Registry?

One of the things we’re asking all patients to do is to give consent for their data to be used.  This is in line with what’s happening in the health service generally.  You don’t have to give consent for your data to be used for your IBD care in your hospital, but if its going to be used for another purpose (such as for the Registry) then you should be asked to give written consent.

When your hospital starts participating in the IBD Registry, you may be sent or given a Patient Information Leaflet to read and, if you are happy to proceed, there will be a consent form you can sign.