Sections News

BSG response to NICE consultation on biologics

Professor Chris Probert, Chair BSG IBD Section Committee

The BSG has responded to NICE's interim evaluation of whether infliximab, adalimumab and golimumab should be available for patients with moderate to severe ulcerative colitis. The response was drawn up with input from members of the IBD Committee as well as Section members who approached us because of their particular expertise. We are very grateful for their time and effort on behalf of our patients.

Our response as key stakeholders runs in parallel with responses from ACP, RCP, the IBD Nurses and CCUK. The patients themselves have arranged an e-petition with roughly 2000 signatures. I think jointly we have expressed our views very strongly. This issue is unlikely to be resolved in the next few months, in the meantime NICE are considering Vedolizumab, so watch this space.

New Evidence Update on Crohn's disease from NICE

An Evidence Update on Crohn's disease has been published by NICE.

NICE Evidence Updates help to reduce the need for individuals, managers and commissioners to search for new evidence and keep health and social care professionals up-to-date with new research. While Evidence Updates do not replace current accredited guidance and do not provide formal recommendations, they do highlight new evidence that health and social care professionals may wish to consider alongside current guidance.

The new Evidence Update focuses on a summary of selected new evidence relevant to NICE clinical guideline 152 'Crohn's disease: management in adults, children and young people' (2012).

Feedback on the Evidence Update may be sent to 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

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