We’re delighted to announce that the web tool is now live, and the first sites are currently on track to be entering data by mid-August. We have secured the necessary permissions for hospitals in the devolved nations to access the Registry Web Tool through the N3 secure network. Outgoing president Ian Forgacs has called on all IBD teams to match the BSG’s commitment to the Registry and safeguard its success by taking part, so if you’re among the few who haven’t registered to join yet, please see the section below on what to do next.
Transition focus on biologics
To deliver local value to teams and patients, the steering group has proposed reporting on a set of 6 key performance indicators on biologics in 2016-17, with the aim of building a UK-wide register of all people receiving biological therapies for IBD by the end of 2017. The combined UK data will become a unique resource for real-world clinical effectiveness and health economic studies in IBD care.
As a continuation of the biologics audit, the programme remains on the Quality Accounts list and the national clinical audit and patient outcomes programme (NCAPOP) in England.
An important update on consent
We have received an extension of our Section 251 exemption for England and Wales until May 2017, which means that consent is assumed unless patients opt out, and data can be submitted without formal consent. Posters (available from firstname.lastname@example.org) must be prominently displayed in clinic so that patients know your team is participating in the IBD Registry, but this gives clinical teams more time to gain written consent from all their patients.
An additional consent question has been added to allow for the future use of fully anonymised data in reports to commercial organisations. The new consent materials will be sent to registered users during August 2016.
What to do next
If you’ve registered you’ll be hearing from us soon about what you need to do. If you haven’t already done so, please register to be part of the programme using the form at http://ibdregistry.org.uk/wp-content/uploads/2016/05/Registration-Form-for-participating-in-the-IBD-Registry2.pdf.
If you’d like more information on any aspect of joining the IBD Registry or entering data please contact IBDProgramme@rcplondon.ac.uk