We are asking all sites that have any patient data live on a Registry-compatible system to upload their patient data to NHS Digital (HSCIC) during November. This is really important as the BSG Trustees will be assessing BSG support for the Registry/Audit in 2017 when they have their December 2016 meeting and we want to be able to show the good progress the Registry is making by reporting the maximum possible numbers of sites contributing and the numbers of patients in the central Registry. Every upload, even if the patient numbers on your database are relatively low, will help. If you need any help at all to upload your data please contact email@example.com
IBD Audit Transition to IBD Registry
The UK IBD audit team at the Royal College of Physicians have delivered their final report, and data collection to support audit and quality improvement is now moving to the IBD Registry. Teams can participate using a choice of data entry systems including existing local systems. Being part of the IBD Registry will give teams:
- Local data to manage their biologics patients and IBD service more effectively
- The chance to be part of ongoing national audit of the safety and appropriate use of biologics and biosimilars
The goals for 2016/17 are:
- Transfer data collection from the RCP biological therapy audit web tool, which will be closing, to the IBD Registry.
- Develop a near-complete UK Register of IBD patients on biologics by the end of 2017
172 teams have now registered to be part of the project and there are 63 live sites using a variety of different data entry methods, with a further 20 in the pipeline. If you haven’t registered yet please contact IBDProgramme@rcplondon.ac.uk
The first two IBD teams in Scotland are now set up to use the IBD Registry Web Tool and Ian Arnott is chairing a Delivering Outpatient Integration Together (DOIT) IBD Service Development Day in Stirling on the 30th of November, where teams can find out more about how the various IT initiatives in Scotland will help to deliver the National Blueprint for Inflammatory Bowel Disease in Scotland and feed into the UK IBD Registry.
New consent materials
Following the extension of our Section 251 exemption for England and Wales until May 2017, consent is assumed unless patients opt out, and data can be submitted without formal consent having been obtained. Posters must be prominently displayed in clinic so that patients know your team is participating in the IBD Registry, but this extension gives clinical teams more time to gain written consent from all their patients. Please contact Simone (firstname.lastname@example.org) if you need clinic posters.
Following discussions with Crohn’s and Colitis UK and CICRA, we’ve added a question to the consent form to allow for the future use of fully anonymised and aggregated data in reports to health-related companies with an interest in IBD. The new consent materials are being sent to registered users and are available here. (Advice regarding the additional consent question is included in the Guidance for Hospitals document and is being sent to those IBD Teams that have already obtained consent from some patients.)
What to do next
If you’ve registered 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 the form here.
If you’d like more information on any aspect of joining the IBD Registry or entering data please contact IBDProgramme@rcplondon.ac.uk