The report suggests that biosimilars are safe and effective for IBD patients and if adopted can reduce the cost of treatment by half. This is the final report produced by the UK IBD audit at the Royal College of Physicians. Data collection to support audit and quality improvement will move 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
In time the Registry will become a unique resource for real-world clinical effectiveness and health economic studies in IBD care. 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
Over 160 teams have now registered to be part of the project. If you haven’t registered yet and would like to, please contact [email protected]
Wales
Cwm Taf (Dr James Berrill and team) has become the first site in Wales to make a data submission, an important milestone for the UK Registry. We’d encourage all sites to undertake their first data submission process as soon as you have a few patients on the database, so that you become familiar with the process. If you’d like support from Mark Allan, our Registry Data Manager, to talk you through the process, he can be contacted via [email protected]
Scotland
IBD teams in Scotland are invited to join Ian Arnott at the Delivering Outpatient Integration Together (DOIT) IBD Service Development Day in Stirling on the 30th of November to find out how the various IT initiatives in Scotland will help deliver the National Blueprint For Inflammatory Bowel Disease In Scotland and feed into the UK IBD Registry.
Central Manchester University Hospitals case study
In our latest case study, Dr Karen Kemp describes the importance of identifying an IT champion to drive the process, how having one database for all their patients is saving duplication of effort and how having an incremental approach to data entry is paying off.
We’d love to hear about your experience, so if you’ve got an example of good practice or an experience others can learn from, please contact [email protected]
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 (available from [email protected]) 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.
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.
If you’d like more information on any aspect of joining the IBD Registry or entering data please contact [email protected]