The UK IBD Registry

Making-Information-Work

IBD Registry

The IBD Registry provides the infrastructure to capture pseudonymised IBD patient data and link it with routinely collected NHS hospital statistics. 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

As the national IBD audit is coming to an end, the IBD Registry 2016/17 goals are to move the RCP biological therapies audit and quality improvement programme into the Registry and develop a complete UK Register of patients on biologics by the end of 2017.

This will give participating teams local data to manage their biologics patients and IBD service more effectively, while patients, clinicians and the NHS will all benefit from national audit of the safety and appropriate use of biologics and biosimilars. In time, the combined UK data will become a unique resource for real-world clinical effectiveness and health economic studies in IBD care.

 

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Local value of Registry data – the Dorset experience

With the launch of the IBD Registry web tool last month, we’re all set for every IBD team in the UK to join in, and to start to benefit from collecting useful local data to help deliver better patient care

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IBD Registry web tool launched!

We’re delighted to announce that the web tool is now live, and the first sites are currently on track to be entering data by mid-August. We have secured the necessary permissions for hospitals in the devolved nations to access the

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Audit & Registry – where next?

The UK IBD Registry:
an introduction


Driving excellence with the IBD Registry

Dr Barney Hawthorne on IBD Registry as an opportunity for UK to be world-leading


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