January Headlines

Feb 2, 2017

·      The RCP audit now has closed so you need to export your data if you haven’t already done so.

·      A data visualisation module for the Registry Web Tool will be piloted soon.

·      NHS England has included the IBD Registry Biologics Audit on the Quality Accounts list for the coming year.

·      Trusts in England are being asked for a £2,500 subscription fee to help the BSG cover the costs of the Biologics Audit. Trusts responding by 15th March will benefit from 40% discount.

·      To help you get the most out of Registry participation, the IBD Registry 2017 Roadshow will visit Birmingham, Cardiff, Darlington, Exeter, London, Sheffield and Warrington in May/ June, and Glasgow in the autumn. Register your interest at http://ibdrroadshow2017.eventreference.com/

·      A PhD opportunity at University of Liverpool on record-keeping in patients with IBD using electronic patient record systems is open for applications until 13th February https://www.findaphd.com/search/projectDetails.aspx?PJID=82615


The RCP biological therapies audit web tool has now closed. In line with programme closure and information governance procedures, the data will be permanently deleted in February and there will be no opportunity to retrieve it after this point. If you haven’t already done so, and you want access to your audit data you need to export it as soon as possible. You can store the information locally if you don’t yet have an IBD Registry data entry system up and running. If you need any help please contact [email protected]


Participation continues to grow, with 85 sites now set up to enter data into the IBD Registry, and over 22,893 patient records submitted. If you have not yet registered to participate in the IBD Registry, would like help uploading your data, or have any other registry related queries please contact [email protected]


A series of half-day workshops will be held around the country to support clinical teams as they join the IBD Registry. The workshops will provide protected time for teams to learn about the Biologics Audit and QI programme using the IBD Registry, and to develop local plans for IBD Registry adoption. Each meeting will be tailored to local needs and aim to provide information, support and hands-on guidance. Experts from the IBD Registry will be on hand to answer questions and interactive workshops will provide practical support for teams to work together to develop your own plans. Dates will be confirmed soon, and you can register your interest here http://ibdrroadshow2017.eventreference.com/


A data visualisation module is being prepared for piloting on the Registry Web Tool. It will provide charts illustrating the profile of the patients you have entered into the tool and how you are progressing with the Biologics Audit KPIs, compared to other Web Tool users. The pilot system will be available on the Registry Web Tool from late February/ early March and we will be inviting your feedback soon afterwards to assist further development. This work is the final element in the RCP IBD Programme and has been developed with the Registry Team.


The IBD Biologics Audit, which is now managed by the IBD Registry has been included on the NHS England list of Quality Accounts for the coming year. The intended benefit for IBD teams is to bring the Biologics Audit to the notice of the Trust Board and Chief Executive, which should help with gaining support for approval and implementation of a data collection system and resource for data entry. It is not the Registry’s intention that Quality Accounts status be used within a Trust to pressurise members of the IBD team about audit data entry and we would ask you to inform us if this occurs. For more information on the IBD Registry Biologics Audit and Quality Accounts see https://ibdregistry.org.uk/qualityaccounts/


As you know the IBD Biologics Audit is no longer funded centrally by NHS England. Therefore the BSG is obliged to seek a local subscription from Trusts as a contribution towards the costs of maintaining the Biologics Audit now it is part of the IBD Registry. This subscription has been set at £2,500 which is significantly less than the cost of one patient on biologics treatment for one year. In return the IBD Registry will provide benchmarked quarterly reports on the Biologics Audit KPIs focusing on the areas for quality improvement recommended in the last RCP Biologics Report. At some point later in the year, it is our intention to include reporting of HES data in relation to the Biologics data.

The BSG recognises that introducing the subscription for the Audit will not be welcomed in some Trusts and has therefore offered to reduce the cost in the first year by 40% if a Trust provides a Purchase Order by 15th March 2017. The BSG and Registry have written to all Chief Executives in Trusts in England explaining the new arrangements for the Biologics Audit, putting the subscription cost in the context of overall expenditure on biologics for IBD, and reminding them that participation in the Audit is part of the NHS England Quality Accounts requirement.

Some Trusts have been concerned that they may not be able to submit data to the IBD Registry if their Trust decides not to subscribe to the Audit. At present, this is not the case: you will still be able to submit data, but the Registry will not be able to provide the Trust with the benchmarked Biologics Audit reports. A copy of the letter to CEOs is available on request to [email protected]


The following PhD studentship based in Liverpool, funded via the MRC Network of Hubs for Trials Methodology Research (HTMR), is now open for applications: Record-keeping in patients with inflammatory bowel disease (IBD) within electronic patient record systems: Current practice and motivations for collecting structured data

Supervisors:  Dr Keith Bodger, Prof. Paula Williamson, Prof. Bridget Young

Closing date, 13th February 2017 @4pm

Details at:  https://www.findaphd.com/search/projectDetails.aspx?PJID=82615

Do please forward to any local trainees who might be interested.


The Registry has secured industry funding to help sites with data entry. Many thanks to our colleagues at AbbVie, Allergan, Dr Falk, Janssen, Napp, Pfizer, Takeda, Tillotts and Vifor for their contributions to this fund. IBD teams were invited to apply for grants in January and we will be in touch with applicants in the next few weeks. For more information please contact [email protected]


·      Teams can participate in the IBD Registry using their own choice of data entry systems to suit local needs (including some existing local systems)

·      Being part of the IBD Registry will give teams:

·      Robust local data to manage their biologics patients and IBD service more effectively, efficiently and safely

·      Evidence to benchmark the quality of their service as part of a nation al audit of the safety and appropriate use of biologics


Looking ahead to 2017, we’re aiming to present the first IBD Registry data on Wednesday 21 June 16:30 – 18:00 at the BSG annual meeting, with a publication reporting on the majority of biologics patients in England at the end of the year. All sites contributing patient records will be acknowledged in presentations of Registry data. Details will be available in the next few months.


If you’ve registered to join the IBD Registry you will have information about what you need to do to participate. If you haven’t already done so, please register to be part of the programme using this form. For any other queries please contact [email protected]

With our thanks to you for your continued contribution to the IBD Registry,


Dr Stuart Bloom, IBD Registry Chair

Dr Fraser Cummings, IBD Registry Clinical Lead


3 February 2017: 10 years of the UK IBD audit: framing the future, RCP in London

May/ June 2017: IBD Registry Roadshow (dates and venues will be circulated soon)

21 June 2017: IBD Registry Symposium at BSG Annual Meeting 2017, Manchester

December 2017: Publication of the IBD Registry initial report



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