The data submission deadline will be end of July
As we now are the IBD Registry Limited (a separate independent not-for-profit company), we are taking over the Data Controller responsibilities from the BSG. Unfortunately the formal process to complete this change is taking much longer than anticipated, and until this has been finalised the NHS Digital IBD audit platform has to remain offline, preventing the upload of data. We are anticipating that the Data Controller change will be completed, and thus the NHS Digital platform will re-open, by the end of July – and so this is the new data upload deadline. We will inform you, by email, when we have any updates to allow you the time necessary to upload your data.
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:
End of July (date TBC)
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