Regional Meetings and Next Steps
Most of you who came to a regional meeting have written a local plan focusing on the next steps you need to take to join the Registry. We hope you’ve been able to put your plan into action, but if you have come up against any barriers that you think the Registry team can help you with, please don’t hesitate to get in touch via firstname.lastname@example.org or by emailing email@example.com
For those of you who need to write a business case, we have an example on the Registry website here.
All the presentations from the regional meetings are available here.
For those looking for slides outlining local clinical and patient benefits, the section (in any of the regional meetings slide decks) on How Being Part Of The IBD Registry Might Help Improve An IBD Service should be of use.
Registry Meeting in Scotland
This was to be held on 20th April, but has been postponed and will be rearranged in a few months’ time. The IBD Registry is working closely with the IBD Audit Team at the Royal College of Physicians, with key Scottish gastroenterologists and with Crohn’s and Colitis UK to deliver a coordinated approach that makes sense for Scotland in the immediate and longer term. The development of this IBD IT strategy is taking place with the support of the Scottish Government and rather than hold the meeting now, we aim to arrange it when we can give more definite information about the technical solutions and the information governance issues.
IBD Section Chair
Barney Hawthorne has described the IBD Registry as a chance for UK gastroenterologists to do something world-leading, in terms of gathering data in real time, to better monitor our patients’ treatment and outcomes. See the whole interview here.
BSG meeting in June
Join us at the BSG in Liverpool on Thursday 23rd June 8:45-10:15 for an update on all the Registry projects. More details to follow soon.
The IBD audit programme and the IBD Registry will be sharing a stand and taking the opportunity to showcase their work going forward. Please come and meet us and hear more about the future plans.
IBD Audit news
The UK IBD Audit is moving towards an improved system for data capture and quality improvement, using the IBD Registry. This new programme of work remains on both the quality accounts list and the national clinical audit and patient outcomes programme (NCAPOP) in England. Your ongoing participation is very important, and you should have received a registration form from the IBD Audit team at the RCP so that you can sign up to be part of the new initiative. If you have any queries about this you can contact Jessica Watts, IBDProgramme@rcplondon.ac.uk
To find out more about joining the Registry click here or email firstname.lastname@example.org
Find out more about…
Over ten thousand people in the UK with IBD have entered their data over the past few days, many of them giving feedback on the Tool. This has helped us to make sure that the risk levels in the Tool are based on accurate, up-to-date information from patients. In...
Given the special circumstances putting pressure on IBD teams and wider health services, we have created some in-depth articles below in an easy to read format: Switchers: Changing originator biologic to biosimilar Changing originator biologic to biosimilar With many...
With the COVID-19 outbreak and the resulting pressure on IBD clinical teams, the next IBD Registry data submission (planned beginning of April) has been relaxed, so that the next data submission dates will be 10 July followed by 9 Oct 2020. IBD clinical teams should...
Huge congratulations to IBD clinical teams across the country - we have surpassed the 60,000 patient record mark. At time of writing we hold 63,181 records. 62 IBD teams submitted for this last quarter, 24% more than the same period last year. Figure: number of...
PROMs: early benefits for care of IBD outpatients who directly report their symptoms via digital tablet
Pic: Pearl Avery, Clinical Nurse Specialist at Dorset County Hospital, by her clinical poster at ECCO2020, Vienna A UK nurse-led hospital team working with the IBD Registry has announced the success of an initiative to capture data reported directly by outpatients who...