IBD Registry Symposium at BSG

Jul 6, 2017

A very successful session was held at the BSG Meeting with a broad Registry update from Fraser Cummings, a patient perspective from David Barker including a video message from Carrie Grant, an introduction to the new Data Visualisation charts on the Registry Web Tool from Mark Allan and interim findings from the Anaemia Service Evaluation Study being conducted using the Registry Web Tool.

Perhaps the most eagerly awaited presentation was from Keith Bodger providing an insight into the analysis and reporting that is now becoming possible by combining the Registry and HES data. Keith also presented a summary form the recent survey on how best to present Registry and HES data back to sites and thanked everyone for their responses.

The presentations from the Registry session will be made available on the IBD Registry Website over the next few weeks. www.ibdregistry.org.uk


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.


The 2017 Roadshow has now visited 6 cities in England and Wales, reaching over 123 IBD doctors, nurses, audit leads and other team members from over 40 trusts or health boards. With a focus on practical information and action planning, the meetings provided a chance to think and plan away from the hospital, as well as a forum to share experiences and tips. The most common challenges and proposed solutions are below:

Data entry

Pick a sub group

Plan your approach

Apply for a grant

How to manage the consent process

Consent by post

During infusion clinic

IT barriers

Enlist support of patient panel

Quality accounts

How to get the team on board

Meet with team & show them the data

Feed back to MDT

Remember Rome wasn’t built in a day

Understanding more about the Registry data entry options

Contact [email protected]

Request a demo from PMS suppliers (e.g. CIMS, Emis)

Speak to users of different systems

A meeting is planned for Scotland later in the year, and you can register your interest at http://ibdrroadshow2017.eventreference.com/


Thank you to everyone who uploaded data to NHS Digital at the end of June. The next data submission deadlines are 30th 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]. Once you are registered with NHS Digital, please make your first data submission as soon as possible to test the process and familiarize yourself. Please do not wait for the deadline date to do this as it is difficult for the Registry and CIMS Support services to resolve any technical issues at the last minute.

You will not cause any problems by uploading data more frequently. The data deadline is the point at which NHS Digital will create a new extract of the complete dataset, pseudonymise it and provide it to the Registry for analysis.

With our thanks for your continued engagement in the IBD Registry,

Dr Stuart Bloom,
IBD Registry Chair

Dr Fraser Cummings,
IBD Registry Clinical Lead

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