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 firstname.lastname@example.org
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 IBDProgramme@rcplondon.ac.uk
- 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@example.com 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 firstname.lastname@example.org
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…
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...
The Health Quality Improvement Partnership (HQIP) has confirmed the IBD Registry as the provider organisation for Quality Accounts for NHS Trusts providing Inflammatory Bowel Disease (IBD) services in England & Wales. HQIP, which runs the Quality Accounts scheme...