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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.

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

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Visiting cancelled

Due to the increasing number of cases of coronavirus across the UK, York Teaching Hospital NHS Foundation Trust has made the decision to cancel all visiting to all its hospital sites in order to ensure the safety of patients and staff.

There are three exemptions to the ruling which are for one parent of a sick child under 18, for the partner of a woman giving birth and end of life patients at the discretion of the ward sister.

We would ask people to respect this decision and to treat our staff, who will be enforcing the visiting restrictions, with courtesy and respect.  For more information visit our website.


Outpatient appointments

We know that NHS services will come under intense pressure as the coronavirus spreads, and as a Trust we need to redirect staff, free up staff for refresher training and carry out any works as necessary, so we are able to maximise capacity for patients for when the number of infections peak.  We also need to reduce the number of people coming into our hospitals to protect our patients, as well as keeping our staff safe, well and able to come into work.

To do this, with effect from Tuesday 24 March 2020, along with other trusts in the Humber Coast and Vale partnerships, we have made the collective decision to suspend all non-urgent routine outpatient appointments for at least three months.  Urgent and emergency cases and cancer appointments will be carrying on as normal.

These are unprecedented times and we thank you for your understanding.  We know many people waiting for treatment will be disappointed or worried but please not contact the hospital as we will be contacting everyone directly affected in the coming days and weeks.

If you do not receive a letter or a phone call from the hospital, please turn up for your scheduled appointment as normal unless you have symptoms of coronavirus, a cold, flu or norovirus in which case you should contact us to cancel your appointment by clicking here.


Coronavirus (COVID-19)

If you have symptoms associated with coronavirus including a new continuous cough and a high temperature, you are advised to stay at home for 7 days.

Please do not book a GP appointment or attend your GP practice.

If you live with other people, they should stay at home for at least 14 days, to avoid spreading the infection outside the home.  After 14 days, anyone you live with who does not have symptoms can return to their normal routine.

But, if anyone in your home gets symptoms, they should stay at home for 7 days from the day their symptoms start. Even if it means they're at home for longer than 14 days. The most up-to-date public guidance is always online at www.nhs.uk/coronavirus

If your symptoms are serious, or get worse, NHS 111 has an online coronavirus service that can tell you if you need further medical help and advise you what to do.  Only call 111 direct if you are advised to do so by the online service or you cannot go online.