UK IBD REGISTRY ENDS YEAR ON A HIGH NOTE
We reached the end of 2016 with 60 sites actively participating in the IBD Registry, and over 21,000 patient records submitted. 80 sites in total have a ‘live’ system for data capture, and 21 additional sites are in the process of setting up so we expect patient numbers to increase steadily. If you have not yet registered to participate in the IBD Registry, would like help uploading your data, or have any other registry related queries please contact [email protected]
DID YOU KNOW?
- The RCP audit is closing in January 2017
- The IBD Registry is now the vehicle for the biologics audit and quality improvement programme
- Biologics audit data can be transferred from the RCP audit into the IBD Registry Web Tool or PMS before the audit closes in mid-JanuaryFor more information please contact [email protected]
- As part of the transition, we encourage teams to attend 10 years of the UK IBD audit: framing the future at the RCP in London on Friday 3 February 2017. Click here to book your free ticket.
BE PART OF THE REGISTRY PUBLICATION COLLECTIVE
Looking ahead to 2017, we’re aiming to present the first IBD Registry data on Wednesday 21 June 16:30 – 18:00 at the BSG annual meeting, with a publication reporting on the majority of biologics patients in England at the end of the year. All sites contributing patient records will be acknowledged in presentations of Registry data. Details will be available in the new year.
FUNDING AVAILABLE FOR LOCAL DATA ENTRY SUPPORT
The Registry has set up an industry working group with a number of pharma companies; as well as working to secure significant funding for long term maintenance of the registry, members of the industry group have generously contributed to a fund specifically to help sites with data entry. Many thanks to our colleagues at AbbVie, Allergan, Dr Falk, Janssen, Napp, Pfizer, Takeda, Tillotts and Vifor for their contributions to this fund. For more information please contact [email protected] by 20th January.
DID YOU KNOW?
- Teams can participate in the IBD Registry using their own choice of data entry systems to suit local needs (including some existing local systems)
- Being part of the IBD Registry will give teams:
- Robust local data to manage their biologics patients and IBD service more effectively, efficiently and safely
- Evidence to benchmark the quality of their service as part of a nation al audit of the safety and appropriate use of biologics
- For more information on the IBD Registry, visit ibdregistry.org.uk
If you’ve registered to join the IBD Registry you will have information about what you need to do to participate. If you haven’t already done so, please register to be part of the programme using this form. For any other queries please contact [email protected]
With our thanks to you for your continued contribution to the IBD Registry,
Dr Stuart Bloom, IBD Registry Chair
Dr Fraser Cummings, IBD Registry Clinical Lead
- 13 January 2017: RCP audit closes (audit data will not be accessible after this date)
- 20 January 2017: Deadline for applications for local data entry support funding
- 3 February 2017: 10 years of the UK IBD audit: framing the future, RCP in London
- April / May 2017: IBD Registry Roadshow (dates and venues will be circulated soon)
- 19-22 June 2017: BSG Annual Meeting 2017, Manchester
- December 2017: Publication of the IBD Registry initial report
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