Maximizing the value of the IBD Registry


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Recording and analysing data from IBD patients across the country.


This project will develop and test new ways to capture, link and analyse information about routine IBD care.

Dr Keith Bodger, University of Liverpool

What is this research looking at?

The researchers are developing and testing new ways of recording and analyzing information about IBD patients. They want to link information from the new IBD Registry to existing ‘routine’ NHS hospital data.  If successful, the project may create powerful analytic techniques that can be used by all NHS hospitals to benefit patients and enhance future IBD research.

Most hospitals don’t have the ability to maintain their own register of local IBD patients, and at present a lot of routine NHS data cannot be easily analysed and interpreted in a useful way.  The new IBD Registry enables clinical teams to collect their own data locally via an IBD Patient Management System, a web portal, or existing databases, and then the data is uploaded centrally to the IBD Registry. The IBD Registry aims to provide the first UK wide data base of anonymous data from IBD patients – the information gathered can then be used to help IBD service delivery, audits and research.  Previous studies have shown that it is important to link a patient’s records over time, so the full sequence of the patients care can be seen – for example, the  diagnosis, investigations, and treatment - and the IBD Registry should help with this.

The aim of this study is to investigate how feasible it is to use IBD Registry data at five  hospitals – each hospital will use a different method of uploading their data to the registry, such as the IBD Patient Management System, portal, or local recording system. This data will then be checked against the hospital notes of 30 patients at each hospital to check how accurate the IBD Registry is at recording data.  The researchers will then go on to develop methods of analysing the NHS data to capture the key events in an IBD patient’s journey, for example inpatient stays, outpatient appointments, and A&E visits.  They will then investigate ways of linking the IBD Registry records to the routine NHS data.  This should lead to more data about IBD patients, and could help lead to the development of ways to measure hospital services.  It should also generate individual ‘year of care’ reports of each patient on the IBD Registry. 

The researchers hope that this study will provide access to accurate information for clinical and financial planning, and also improve the ability to audit selected sub-groups of patients, for example those on biological drugs.  This should provide more information to help with decision making for patient treatments. The IBD Registry will also help with research and clinical trials, because it will provide a large amount of specific data about IBD patients which can be analysed. It will also provide powerful analytical techniques that can be used by all NHS hospitals.

What do researchers think this could this mean for people with IBD?

The researchers hope that this study will lead to more information and data about IBD patients, which should eventually help improve the quality of care for people with IBD.

Who is leading the research: Dr Keith Bodger, University of Liverpool

Our Funding: £126,234

Duration: 24 months

Official title of the application: Maximising the value of the UK IBD Registry for service delivery, audit and research

Tag: IBD registry