Sections News

Questions about applying to the EME researcher-led workstream?

Join EME's tweetchat on 15 January 14:00-15:00. Key representatives from the EME Programme and the NIHR Research Design Service will be available to answer your questions. Follow @OfficialNIHR and @NIHR_RDS and tweet us a question including the hashtag #EMEChat.

 

IBD Nixon Twin and Multiplex Registry

UK gastroenterologists are invited to refer concordant and discordant twin pairs, as well as families where three or more first degree relatives have an IBD diagnosis, to the twin/multiplex registry. We will collect epidemiological data and invite members to donate to a biobank. This will become a powerful research resource that will be available for research collaborations in the future. Further information about how to refer twins or families is available from Hannah Gordon, Senior Clinical Research Fellow (Gastroenterology), IBD Nixon TAM Registry Co-Investigator, Chelsea and Westminster Hospital, This e-mail address is being protected from spambots. You need JavaScript enabled to view it

IBD Registry Update

The first of three pilot sites for the UK IBD Registry started trialling the system on Tuesday 15th January. Launching later this year, the Registry will provide the first ever UK-wide repository of anonymised IBD patient data for prospective audit and research. By bringing this data together for the first time, the Registry Board aims to:

  • Provide local, regional & national data in order to better define the pattern of ulcerative colitis and Crohn's disease
  • Improve understanding of long term outcomes
  • Drive continuous improvement in patient care and access to care across the UK
  • Inform commissioning and service design
  • Support IBD research

Data can be entered either from existing databases, via a web portal, or by means of a new IBD Patient Management System (PMS), which has been developed by Chameleon Information Systems Ltd (suppliers of InfoFlex) under the guidance of Clinical Lead, Fraser Cummings. Fraser and his team have designed the PMS so that data can be easily entered during the consultation. The PMS will also provide real-time benefits such as a clinical summary of each patient at a glance, to save time leafing through paper notes, and work lists to support, for example, azathioprine monitoring, biologics follow-up or MDT meetings. Subject to local IT arrangements, the PMS can also be integrated with local PAS to further minimise data entry.

The pilot stage is due to run till March, and the launch of the Registry is scheduled for the BSG conference in June.

To find out more about the project, and how you can join, visit www.ibdregistry.org.uk or email This e-mail address is being protected from spambots. You need JavaScript enabled to view it

IBD Quality Improvement Programme

Following on from the success of IBD National Audits and the IBD Standards of Care, The Health Foundation is funding a new web-based tool (GRS) that will provide self-assessment for services to benchmark their care, as well as a repository of useful documents and data for services to adapt for use in their own Trusts. Regional Meetings have been set up to explain this further, please visit: http://www.ibdqip.co.uk/Default.aspx to find out if there is a meeting or a network set up in your region.

IBD Biologics Audit and IBD Registry

The Biologics Audit

Almost half of UK IBD Audit sites have entered data into the biologics audit. Again I am most grateful to sites that have entered the data and I want to encourage those that have not. Firstly I would like to emphasise that this is a purely audit project and is not fulfilling the research aims of any group or individual. This is your data and we hope that by entering cases into the audit that you will get benefit from this.

We will be producing an interim national report on the biologics audit as part of the UK IBD Audit 3rd round which will be launched in June 2012 at the DDF meeting in Liverpool.

UK IBD Registry

The UK IBD Registry is currently being set up; Three areas of work are being progressed in between meetings of a full board containing representatives of all related professional groups:

  • Information Group developing the dataset and clinical benefits of the system
  • Governance Group looking into issues of confidentiality and consent
  • IT Group developing a specification and tender invitation

There has been regular communication with the other IBD projects, particularly the UK IBD Audit, and the importance of coordinating the development of the Registry with the current and next phase of the UK IBD Audit is recognised by everyone. The Registry system will be presented at DDF in June 2012 in Liverpool.

Drs Ian Arnott & Stuart Bloom

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