We’re at BSG 2018
Come and meet us!
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. We will have presentations running, our data entry tools plus samples of the reports that result from all the data you entered. Our Registry team will be on the stall Tuesday 5th and Wednesday 6th June, looking forward to answering your questions, listening to your feedback and generally helping in any way we can. Our clinical leads and our CEO, Liz Dobson, will be at Conference over Tuesday and Wednesday – do look out for us and say hello.
IBD Registry presentations
We’ve got lots to update you on regarding Registry data and plans for the remainder of 2018 and beyond.
- On Tuesday 5th, the IBD Registry Data Analytics team from the University of Liverpool will presenting two papers (see below).
- On Wednesday 6th, the IBD Section symposium will focus on improving IBD services in tribute to Richard Driscoll, and include presentations from Liz Dobson, Keith Bodger, David Barker, John Mansfield, Sean Weaver among others. This will be a great opportunity to find out more about the benefits of the IBD Registry for your hospital and your patients.
|Title||Location and time||Presentation|
|Gastroenterology service free papers||Tuesday 5th
9:03am – 9:15am
|Benchmarking of activity, process and outcome of emergency admission for ulcerative colitis across English hospitals|
|Improving support for IBD patients||Tuesday 5th
2:48pm – 3:00pm
|Growth in participation, registrations and data maturity in the UK IBD registry: Focus on biologics|
|Improving IBD services in the UK: A tribute to Richard Driscoll||Wednesday 6th 9:00am – 10:30am Hall 3A|
If you don’t manage to make it to these sessions – videos and slides will be available on www.ibdregistry.org.uk after the conference.
Our Registry team is growing!
We’re very pleased to announce that we have two new Registry team members joining us. Sarah Boyks is joining us as our new Data Service Manager, and Katie Gray is joining us as our Finance & Business Manager. Sarah has a background that includes data management, health services and also a Registry. She was born in Germany, grew up in Spain, then England, and speaks 4 languages fluently. In her free time, she is a volunteer in beach clean ups (helping reduce the amount of plastic waste in the oceans).
Katie’s background is in financial and business support, plus compliance in the charity sector. When she has finished organising everyone at work, she goes home and organises fixtures for 90 teams in a youth football league. She also bakes amazing cupcakes. Both of them say “hello” and look forwards to helping support you.
Data and reporting
Quarterly reports are out!
The second iteration of IBD Registry quarterly reports has just been released. The reports are based on data submitted up to February 2018. All participating sites will receive a full report on data related to their site. If your site has additionally signed up to participate in the Biologics Audit, you will find this under section 3 of the report. The quantity of data fields covered in the Q3 Quality Accounts audit report was expanded to include the number of patients on individual drugs, concomitant immunosuppression, time from diagnosis to initiation of biologic therapy and disease activity indices. As the data continues to grow in volume and quality we’ll expand our reporting to offer you additional insights, which will inform your service provision, improve patient outcomes and support up decision making. Your comments and suggestions ([email protected]) are essential so that we can continue to make sure the reports meet your needs. Keep them coming – we really value your feedback.
IBD Registry Biologics Audit and Quality Accounts
The IBD Registry’s IBD Biologics Audit has been included in NHS England’s list of Quality Accounts for 2018/19. As the audit is no longer nationally funded, the IBD Registry is obliged to make a small charge to participating sites to cover the costs of data handling, reporting and administration. This year the cost is £2,500, with a 20% discount for early subscribers. We’ve heard how much time it saves sites having this data ready for reporting, and we really think that the fee offers great value for money. If you are interested and would like to see a sample report, or learn more about this generally, let us know. Now we have the reports out, we’re getting ready to send out details of how to re-subscribe to the IBD Biologics Audit (for 2018/19). If you are ready to re-subscribe right now, just let us know.
Data submission deadlines
Here are the data submission deadlines for the IBD Registry Biologics Audit during 2018 and 2019. You can find these on our website too. We are here to support you with any issues that may arise in uploading data to NHS Digital, but please help us by allowing a bit of time to upload before the submission is due!
Information for sites
Consent materials updated for GDPR compliance
Our patient consent and information materials have been reviewed and updated in line with the GDPR. There are minor changes to the poster and consent forms to reflect the recent change in the Registry’s legal status – becoming an independent not-for-profit company separate from the BSG means that the IBD Registry is now the Data Controller, not the BSG. The Patient Information Leaflet has more changes in it, to make it compliant with GDPR requirements. You can access these resources on our website or request them by email.
The Clinical Audit Platform is being updated
As part of the Data Controller switch over from the BSG to IBD Registry Ltd, the upload to the Clinical Audit Platform has been paused while all the paperwork for this is being processed. When the Data Controller transfer is complete, the Clinical Audit Platform will re-open again. We’re sorry that we don’t have a target date for this, but we very much anticipate it being before the next quarter-end submission deadline, 29th June 2018.
Last call to all Ferring database users – DEADLINE 30th JUNE 2018
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. It will be possible for sites to transfer their data from Ferring to the IBD Registry.
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]
With thanks for your continued support,
Chief Executive Officer
Dr Fraser Cummings,
IBD Registry Clinical Lead
Dr Stuart Bloom,
IBD Registry Chair
Find out more about:
The IBD Registry is recruiting three important posts to help its next phase of growth as one of the largest IBD registries in Europe. We are recruiting a Data Analytics Manager, a Projects and Operations Manager and a Data Analyst/ Developer. The roles will support...
The IBD Registry has published its first Annual Report on the Use of Biologics for Inflammatory Bowel Diseases for the year 2018-19. The report includes the cumulative results to January 2019 from April 2016 when the Registry assumed the role of supporting the National Audit of Biological Therapies from the Royal College of Physicians.
A £5m grant has been awarded by Health Data Research UK (HDR UK) to establish a health data research hub for inflammatory bowel disease (IBD). The IBD hub, to be known as Gut Reaction – The Health Data Research Hub for Inflammatory Bowel Disease, will bring together...
The IBD Registry is inviting UK IBD clinical centres to participate in a post-marketing safety study of patients using Zessly (infliximab), a biosimilar available for the treatment of Inflammatory Bowel Disease (IBD). This study is facilitated by the Registry on...
The IBD Registry is delighted a presentation prepared by the Registry’s Analytics Hub at the University of Liverpool featured in the British Society of Gastroenterology Annual Meeting in Glasgow. The Audit of biological therapy for IBD - Shawihdi et al Poster BSG 2019...