New IBD Registry organisation launched
Registry to be boosted by new partnership
The British Society of Gastroenterology (BSG), The Royal College of Physicians (RCP), and Crohn’s and Colitis UK, have joined forces to launch IBD Registry Ltd – an independent not-for-profit company and a new legal entity that positions the Registry for future growth. To read more about the new organisation on the homepage: https://ibdregistry.org.uk/
Data and reporting
Really positive growth in patient records this month following the data submission deadline in January. As of the 9th February 2018, the Registry contained 39,795 patient records submitted by 63 hospitals.
This graph shows the increase in patient records and sites submitting data to the IBD Registry. Data valid as of 09/2/18.
Quality Accounts in England
We are delighted to announce that the IBD Registry biologics audit has been included by NHS England in Quality Accounts for 2018/19. We encourage all sites to participate in the biologics audit, as it will help to ensure that IBD patients receive a consistent standard of quality care. For the full list of Quality Accounts audits for 2018/19 please visit their website.
Final quarter data submission
The final submission for the 17/18 IBD Biologics Audit is on the 31st March which is for all data up to 28/02/18. This gives you one month to submit your data before the deadline. If you need support please contact Cheryl at [email protected]
RCP IBD Quality Improvement Programme
Last year 8 teams took part in a 6 month training programme with the RCP. The programme consisted of 3 face to face training days in London, 2 teaching webinars and 2 individual coaching calls. Teams identified an area of their IBD service they wanted to improve and then developed a comprehensive plan to implement the change. Of the 8 teams who took part; 3 teams focused on improving how they treated patients with biological therapies, 2 teams worked on improving the transition of patients from paediatric to adolescent clinics and 2 teams worked on improving the role and function of multi-disciplinary team meetings. You can read one of the team’s project plans here.
Calling all Ferring database users
As many of you are aware, the development of the UK IBD Registry, with its own data entry systems, has prompted a re-evaluation of Ferring’s involvement in the provision of the IBD Database as it effectively duplicates those provided by the Registry. Ferring have decided therefore to redirect their resources and will end their sponsorship of the IBD Database from 30th June 2018.
To facilitate the transfer of data, Ferring have invested, in conjunction with North Bristol NHS Trust, in the development of Version 4. This will allow data to be uploaded to the IBD Registry (via NHS Digital), and is available to all current users of the Ferring Database. Ferring are pleased to be able to offer support to upgrade to Version 4 up to the end of June 2018.
To move to Version 4 and enable migration of your data into the UK IBD Registry, please contact Bryan Archer on 07818 027477 or [email protected]
Mailing list consent
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On the 25th May 2018, the General Data Protection Regulation (GDPR) will bring in new data privacy measures. To be compliant, we’ll need your written consent to hold your email address. If you want to receive future communications from the IBD Registry team, please click this link and press send. Alternatively copy the text below and send to [email protected]
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If you’ve already replied you don’t need to do anything. If you don’t respond before the 25th May 2018 we’ll have to take you off our contact database to ensure our compliance with the new GDPR. Please note, this is just for the monthly newsletter.
With our thanks for your continued contribution to the IBD Registry,
Dr Stuart Bloom,
IBD Registry Chair
Dr Fraser Cummings,
IBD Registry Clinical Lead
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