IBD Registry Update: Upload your patient data in November!
IBD Registry: October Update
The final report produced by the UK IBD audit at the Royal College of Physicians has been published and data collection to support audit and quality improvement is moving to the IBD Registry. Teams can participate using a choice of data entry systems including existing local systems. Being part of the IBD Registry will give teams:
- Local data to manage their biologics patients and IBD service more effectively
- The chance to be part of ongoing national audit of the safety and appropriate use of biologics and biosimilars
In time the Registry will become a unique resource for real-world clinical effectiveness and health economic studies in IBD care. The goals for 2016/17 are:
- Transfer data collection from the RCP biological therapy audit web tool, which will be closing, to the IBD Registry.
- Develop a near-complete UK Register of IBD patients on biologics by the end of 2017
- Further information [ 46 kb ]
IBD Registry Update: September 2016
Local value of patient 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 and support service development. Here Pearl Avery describes the approach she took to entering data on the PMS, involving patients in the process and the value of the information collected in the first ten months. This included being able to achieve CCG funding for the helpline for the first time in 20 years.
- Download full summary [ 168 kb ]
IBD Registry web tool launched
Transition focus on biologics
To deliver local value to teams and patients, the steering group has proposed reporting on a set of 6 key performance indicators on biologics in 2016-17, with the aim of building a UK-wide register of all people receiving biological therapies for IBD by the end of 2017. The combined UK data will become a unique resource for real-world clinical effectiveness and health economic studies in IBD care.
- Download full update [ 43 kb ]
IBD audit transition to IBD Registry
At the BSG annual meeting in Liverpool last week outgoing president Ian Forgacs praised the leaders of IBD Registry and called for all IBD teams in the UK to participate in the new programme for data capture and quality improvement using the IBD Registry.
This new programme is still on the quality accounts list and the national clinical audit and patient outcomes programme (NCAPOP) in England. The aim for the transition year is to report on 6 quality indicators for patients newly started on a biological therapy. This focus will enable the UK IBD clinical community to build the largest biologics registry in the world.
What to do next
If you haven't already done so, please register to be part of the programme using the form at http://ibdregistry.org.uk/wp-content/uploads/2016/05/Registration-Form-for-participating-in-the-IBD-Registry2.pdf.
You can participate using the data entry system that best meets your local needs and arrangements are slightly different in different parts of the UK. If you opt to use the web tool you'll be sent a starter pack once we've received your registration form.
|Northern Ireland, Scotland and Wales||Web Tool||We are awaiting permission for data to flow across NHS England's N3 secure network. Once this is confirmed the IBD programme team will issue registered sites with web tool starter packs|
July data submission
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