Quarterly Reports out this Month
Patient Consent Update
Good news! We have received an extension of our Section 251 exemption for England and Wales until May 2018, 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.
Consent materials are available here. We urge all IBD Teams to ask patients for formal consent. Thank you to all the teams that have been doing this; being able to demonstrate the progress you have made in the proportion of patients consented was fundamental to the exemption being extended.
Data & Reporting
Quarterly Data Reports and Submission
The first quarterly reports will be sent to sites in October. Participating sites will receive a summary profile of the data they have submitted to the Registry in June 2017. Sites that are uploading data as part of the Biologics Audit will also receive a summary showing compliance with the biologics KPIs. Any teams who missed the deadline will receive an example data report. At a later date, an additional report will show Registry data linked with HES data.
The next data submission deadline is 29th December. If you need any help at all in preparing for this, or if you have not yet registered with NHS Digital, please email [email protected].
Drug Dictionary Update
Last month the Registry collected feedback from sites using the WebTool and PMS regarding new drugs to be included in the IBD Registry drug dictionary. Thank you to all the sites who replied with suggestions and comments. The Registry team will be reviewing the suggestions and comments this month, and we will keep you informed in future newsletters as to when and how these changes will be implemented.
Resources for Sites
IBD Registry Field Support Programme
The Registry has successfully made contact with most IBD teams, but there are some gaps. With limited resources and a small London-based team, it has proved challenging to reach 100% of hospitals.
To address this problem, the IBD Registry’s Industry Working Group (IWG) is launching a field support initiative: field based personnel from Dr Falk Pharma, Janssen, Pharmacosmos, Takeda and Tillotts will supplement the Registry team by contacting IBD leads on their behalf.
Field representatives trained by the IBD Registry team will visit hospitals in a non-promotional capacity to offer advice and support. Any information collected during these meetings will be held by the Registry and not by the pharmaceutical companies.
Sites will be notified by email beforehand and can easily opt out if they wish to do so.
Caldicott Guardian Opportunity
The IBD Registry has a vacancy for a Caldicott Guardian to support all Information Governance aspects of the project. Please contact [email protected] for more information.
PMS User Group
Working in collaboration with CIMS, we have launched a PMS User Group for sites using InfoFlex. The purpose of the group is to collate feedback from clinical teams using the software. To gather feedback from as many users as possible, we have sent a link to an online survey to the IBD Registry clinical lead and nurse specialist at each hospital using the InfoFlex PMS. We’d be very grateful if you would complete the survey before the 5th October.
With our thanks for your continued contribution to the IBD Registry,
Dr Stuart Bloom, IBD Registry Chair Dr Fraser Cummings, IBD Registry Clinical Lead
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...