Sections News

IBD Registry News – April 2015

IBD Registry Web Tool
The IBD Registry Web Tool is just about to be released to pilot sites Liverpool and Inverness.
The tool will give clinicians who are unable to use the PMS an opportunity to participate in the Registry, while still benefitting from useful local outputs such as GP letters and patient summaries.

The system also includes the biologics audit data and can generate a biologics work list, so clinical teams will be able to enter their biologics audit data prospectively at the point of clinical contact. We anticipate the Web Tool will be available for general uptake in England in summer 2015, and the rest of the UK later in the year. To view a test version, please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Consent Materials Now Available
Adult and paediatric patient information leaflets, consent forms and posters are now available, as well as a document explaining your responsibilities as participating IBD Registry centres. Please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Anaemia Project
Our first collaborative project looking a specific topic has recently been set up. The IBD Registry and Pharmacosmos are partnering to trial the use of a specially-adapted page of the web tool to collect data on iron-deficiency anaemia in patients with IBD.

DDF Save The Date!
Thursday 25th June 11-1 at DDF
IBD Registry chair Stuart Bloom and IBD Audit clinical lead Ian Arnott will co-chair an interactive session: IBD in the UK, Improving Patient Outcomes and Experience.
With a panel discussion chaired by the Guardian's executive editor Jonathan Freedland, the meeting will identify what needs to be done to make sure all IBD patients receive world class care regardless of where they live in the UK.
The 2015 IBD Registry data will be presented, including for the first time data from sites using not only the PMS but also the web tool and third party systems.

Get Involved
We're planning an update of the IBD Registry website later in the year. We'd love to hear your feedback on the site: what's missing? what information would you like to see?

To find out more about joining the Registry click here or email This e-mail address is being protected from spambots. You need JavaScript enabled to view it

IBD Registry Preliminary Data Presented

At BSG 2014, Clinical Lead, Dr Fraser Cummings presented the first data on over 4000 patients from the UK IBD Registry. This presentation gives an idea of the trends that can be observed using Registry data, such as patients' smoking status or medication. One important development is the linkage with Hospital Episode Statistics (HES) data, which shows healthcare utilisation, e.g. the number of outpatient appointments and A&E admissions each year.

Early Adopters' Lead, Dr Matthew Johnson provided practical advice on using the Registry Patient Management System (PMS) to support patient care, and explained how he and his team at Luton and Dunstable University Hospital have successfully used the system to fund an additional IBD specialist nurse.

We also launched our new Registry Information Pack, a step-by-step guide to joining the IBD Registry, including information for clinical teams, IT and Caldicott Guardians as well as an example business case, PMS screen shots and letters.

Setting the Registry within the broader context of raising standards in IBD, the panel also included Professor Mark Baker, Director of the NICE Centre for Clinical Practice, Dr Ian Arnott, Clinical Lead of the UK IBD Audit and David Barker, Chief Executive of Crohn's and Colitis UK and Chair of IBD Standards and Dr Stuart Bloom, Chair of IBD Registry.

Summing up the meeting, Crohn's and Colitis UK Chief Executive, David Barker commented: "The work of the IBD Standards, Audit and Registry are really critical in terms of driving up standards of care for patients."

To find out more about joining the Registry email This e-mail address is being protected from spambots. You need JavaScript enabled to view it

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

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