Sections News

NICE recommends vedolizumab as a treatment option for Crohn's Disease

NICE has issued final draft guidance which recommends vedolizumab (brand name: Entyvio) as a treatment option for Crohn's Disease after other treatments have failed.

Responding to the announcement, Dr Barney Hawthorne, Chair of the BSG's Inflammatory Bowel Disease Committee, said:

"The British Society of Gastroenterology welcomes the guidance from NICE on the use of vedolizumab in moderate to severe Crohn’s disease. It is extremely good news for patients suffering from this disabling condition. The introduction of anti-TNF therapy for inflammatory bowel disease over ten years ago revolutionised medical therapy for Crohn’s disease, but not all patients respond to these drugs, and some that do will subsequently lose their benefit. The availability of treatment targeting a completely different point in the inflammatory pathway offers hope for those who have primary or secondary loss of response to anti-TNF drugs, and who otherwise would be facing either surgery, or a return to high-dose steroid therapy. Vedolizumab works by blocking the passage of lymphocytes from the circulation into gut tissue, and may therefore provide a more gut-selective immunosuppression. It marks another step in the battle to restore the lives of Crohn's disease sufferers toward normality."

IBD Registry News – June 2015

  • Data on over 5000 patients from 6 hospitals has been submitted via HSCIC to the Registry
  • 5 hospitals have the IBD Registry Patient Management System (PMS) installed
  • 14 sites have ordered the PMS and will implement the system during spring and summer
  • The first site (Southampton) has been set up using a third-party system (Ascribe)

Successful First Submission of Data to HSCIC

Last week saw the first successful upload of hospital data to the Health and Social Care Information Centre (HSCIC). HSCIC is our data safe haven, responsible for the process of stripping out the patient-identifiable data and sending the data to the Registry database. The inclusion of a Registry number means that patient records can be linked back if need be. The involvement of HSCIC will allow us to link to other NHS databases, such as cancer, mortality and HES data.

The data - due to be presented at DDF in June - has been uploaded from five hospitals that are using the Registry InfoFlex Patient Management System (PMS) and one using the IBD module provided in the Ascribe system. The intention is for hospitals to submit data to the Registry each quarter.

Participant Certification

We are now preparing certificates for clinicians who have submitted data to the Registry, for revalidation or appraisal purposes. These can be collected from the BSG stand at DDF. Please let us know if you need a certificate and are not attending DDF.

IBD Registry Web Tool

The IBD Registry Web Tool is about to be piloted at Aintree by Keith Bodger and his team. The Web Tool enables the creation of a local register of IBD patients and the capture of routine clinical information, which can then be displayed as a useful disease summary for clinic and telephone contacts. Summary reports can be generated for the GP or patient and for filing electronically or in the traditional notes. The system includes the data items required for the biologics IBD Audit, 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 not long after. To register your interest, please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Come and See us at DDF!

On Thursday 25th June 11-1, 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. Other speakers include David Barker and Helen Terry from Crohn's and Colitis UK, Fraser Cummings, Omar Faiz, Cath Stansfield, Chris Calvert and Keith Bodger.

With a panel discussion moderated 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. Panel members include Cathryn Edwards, Richard Russell and Jeremy Taylor, chief executive of National Voices. We'll also be running a Registry "surgery". You can book a slot with a member of the Registry team to find out more about joining the project on Wednesday 24th or Thursday 25th June by contacting This e-mail address is being protected from spambots. You need JavaScript enabled to view it

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 News – May 2015

Initial data on just over 3,500 patients has been submitted to the Registry
5 hospitals have the IBD Registry Patient Management System (PMS) installed
13 sites have ordered the PMS and will implement the system during spring and summer
The first site (Southampton) has been set up using a third-party system (Ascribe)

COME AND SEE US AT DDF!

On Thursday 25th June 11-1, 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. Other speakers include David Barker and Helen Terry from Crohn's and Colitis UK, Fraser Cummings, Omar Faiz, Cath Stansfield, Chris Calvert and Keith Bodger.

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.

We'll also be running a Registry "surgery". You can book a slot with a member of the Registry team to find out more about joining the project on Thursday 25th June by contacting This e-mail address is being protected from spambots. You need JavaScript enabled to view it

FIRST QUARTERLY SUBMISSION OF DATA

The intention is for hospitals to submit data to the Registry each quarter and the first regular data submission for hospitals in England is scheduled to take place in July 2015. Participating hospitals will register with the 'data safe haven' that we are using, which is the Health and Social Care Information Centre (HSCIC), and can then upload their data files through a secure portal. The registration process with HSCIC involves the local Caldicott Guardian in authorising the data submission so that information governance requirements are satisfied. If you wish to submit data in July, but have not so far made contact with the Registry Team, please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it

IBD REGISTRY WEB TOOL

The IBD Registry Web Tool is about to be tested in two pilot sites, Aintree and Inverness. The system enables the creation of a local register of IBD patients and the capture of routine clinical information, which can then be displayed as a useful disease summary for clinic and telephone contacts. The system includes the data items required for the biologics IBD Audit, 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 not long after. To register your interest, please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

CONSENT MATERIALS NOW ONLINE

A consent pack for hospitals in England is now available. The pack includes posters, patient information leaflets and adult and paediatric consent forms as well as a document explaining your responsibilities as a Registry participant. You can download pdfs of the documents from the resources section of our website here or contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it to have them emailed to you. Simone can also arrange for you to be sent a pack of two A3 and five A4 colour-printed posters for display in clinics and wards.

DEVELOPMENTS IN SCOTLAND, WALES AND NORTHERN IRELAND

The Registry will be UK-wide, but the information governance and data processing systems are different in each country. For practical reasons the Registry team have focused on setting up these systems and approvals in England first, but the intention is that they should be in place throughout the UK by the end of the year. The lessons learned in establishing the Registry infrastructure in England can be carried forward and adapted for the other countries and this process has already begun.
The first step, however, is for IBD patient data to be collected locally. Significant progress has been made in Northern Ireland, with a project being developed to create one central IBD database system for all hospitals. A similar approach is being explored as a possibility in Scotland in collaboration with the Scottish Service Development Steering Group led by Crohn's and Colitis UK. In Wales, the same patient consent arrangements apply as for England. We have been talking with the Welsh Assembly Government officials about the possibility of hospitals being able to submit data via the HSCIC to avoid setting up a parallel system, but no decision will be taken until the future funding of the IBD Audit has been decided.

GET INVOLVED

There's still time to have your say on the Registry website (ibdregistry.org.uk), which we're planning to update later in the year, so do get in touch to let us know how it could be improved.

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

Biosimilar Medicines: all you need to know

Professor Chris Probert, Chair BSG IBD Committee

The announcement by NICE that anti-TNFs may be used, within licence, for patients with ulcerative colitis has coincided with the launch of two biosimilar infliximabs in the UK.

We (BSG) are arranging an educational meeting in conjunction with representatives from the Association of the British Pharmaceutical Industry Biological Medicines Access Group (ABPI BMAG), Hospira and Napp. Our goal is to deliver an educational event with talks from all interested parties as well as from MHRA and NICE. The meetings are on 9th (London) and 16th (Manchester) June and commence at 14:00.

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

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