Data
Drug Dictionary Update
We are updating the core dataset, including the list of medications, in the drug dictionary. Many thanks to those of you who have already sent suggestions. If you have changes you’d like to propose please contact our Data Manager, Mark Allan, before the 29th September: [email protected]
Registry Participation
It’s great to see numbers continuing to grow, thanks to your efforts. Participation has increased from 25 to 38 sites over the past 6 months. A total of 28,224 patient records have been submitted and this is predicted to rise above 30,000 over the next two months.
Quarterly Data Reports and Submission
Quarterly reports will be available in the next few weeks. Participating sites will receive a summary profile of the data they have submitted to the Registry. Sites that are uploading data as part of the Biologics Audit will also receive a summary showing compliance with the KPIs. Any teams who missed the deadline will receive an example data report.
The next data submission deadlines are 29th September and 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].
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 in the autumn. 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 and can easily opt out if they wish to do so.
Opportunities
Caldicott Guardian Opportunity
The Registry has a vacancy for a Caldicott Guardian to support all Information Governance aspects of the project. Please contact [email protected] for more information.
IBD Nurse & SpR Programmes
Dr Falk Pharma are hosting a Falk Forum on IBD & e-health on the 22nd September 2017 at the Midland Hotel, Manchester. The meeting will explore the new opportunities that e-health provides and will include further education, an introduction to social media and practical take home messages. IBD Registry Development Lead Richard Driscoll will be speaking about how to participate in the Registry.
Core and Dr Falk are running an award for UK-based gastroenterology specialty trainees conducting an audit or quality improvement project in gastroenterology, liver disease or nutrition. The deadline is 17th November 2017. To apply, visit http://corecharity.org.uk/research/research-awards-information/.
Tillotts IBD Nurse Education Day and Recognition Programme will be held on the 17th November 2017 in Solihull. The Education Day is a practical and engaging event for IBD nurses. The IBD Recognition Programme recognises nurses or teams who have developed an innovative project to improve patient care in IBD. For more information please email [email protected]. Deadline for entries is 8th September 2017.
With our thanks for your continued engagement in the IBD Registry,
Dr Stuart Bloom, IBD Registry Chair Dr Fraser Cummings, IBD Registry Clinical Lead