A warm hello from Liz, our new CEO
I have been on board as the CEO of the IBD Registry for just two weeks now, but it has only taken that short time to get a real sense of the goodwill that people have for the Registry, as well as the dedication of the clinical teams in entering data, and the hopes and ambitions for that data to be transformative in the treatment, care and outcomes of IBD patients. In our new not-for-profit company, we have already started to build our vision for the future, and we look forwards to sharing our plans with you soon, and just as importantly, hearing your feedback.
We have a busy year in front of us; just for starters: we will be at the BSG Conference in June, we anticipate running our popular Roadshow again through 2018 and, for those of you that use our Webtool and PMS systems for IBD data collection, we are preparing for the release later this year of a completely new version of the CIMS Infoflex software that powers both of these. A wide range of people have worked together to shape the new design, and the IBD Registry team are eagerly looking forwards to sharing the first release when it is ready. We’ll keep you closely informed on developments in this as we move forwards; please do keep us closely informed with your feedback and thoughts.
In another corner, even as I write this, I know that the quarterly reports (including the Biologics Quality Account Audit) are being finalised, and I am looking forwards to those going out to participating Trusts this month. We will also be inviting Trusts to participate in the 2018-19 Audit; please do get in touch if you want to take part.
There is such huge potential in the IBD Registry. If my first two weeks are anything to go by, it’s going to be a busy few years ahead! I look forwards to being on that journey with you all, towards better IBD outcomes through better information.
The UK IBD Registry
The Inflammatory Bowel Disease (IBD) Registry is the first UK-wide collection of anonymised adult and paediatric IBD data for prospective audit and research. Routine clinical information entered once into an electronic patient record at the point of care, can be used to meet many different needs.
The Registry’s main focus for 2016/17 is on biologics, and the aim is to develop a near-complete UK Register of IBD patients on biologics by the end of 2017. Being part of the Registry will give IBD teams:
- Local data to manage their biologics patients and IBD service more effectively
- The chance to be part of a national audit of the safety and appropriate use of biologics and biosimilars
The IBD Registry Biologics Audit is part of NHS England’s Quality Accounts 2018/19
Biologics audit data submission deadlines:
29th June 2018
28th September 2018
28th December 2018
29th March 2019
Find out more about:
If you’re coming to the BSG Annual Meeting in Liverpool next week, do come and say hello to us – we’re at stand B58 in the exhibition.read more
As we’re sure you know, the General Data Protection Regulation (GDPR) comes into force on 25th May.
This newsletter is to let you know what’s changed at the IBD Registry to be compliant with the new regulations.read more
I have been on board as the CEO of the IBD Registry for just two weeks now, but it has only taken that short time to get a real sense of the goodwill that people have for the Registry, as well as the dedication of the clinical teams in entering data, and the hopes and...read more
The IBD Registry Board is delighted to announce the appointment of Liz Dobson as the first Chief Executive Officer of IBD Registry Ltd from 16th April 2018.read more
The British Society of Gastroenterology (BSG), The Royal College of Physicians (RCP), and Crohn’s and Colitis UK, have joined forces to launch IBD Registry Ltd.read more