IBD Registry web tool launched!
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 [email protected]) 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 https://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 [email protected]
Find out more about…
Continuing its mission to improve the care that people with IBD receive, the Royal College of Physicians is offering IBD teams an opportunity to participate in a new quality improvement collaborative, consisting of three 1-day learning sessions and supported action...read more
Following the establishment of IBD Registry Limited as an independent not-for-profit company, we have moved offices to: The IBD Registry The Ebbisham Centre 6-7 Derby Square EPSOM KT18 8AG Telephone (unchanged): 0203 393 3969 Contact (unchanged):...read more
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