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IBD Registry News - September 2015

PMS Update

Release 2 of the IBD Registry Patient Management System (PMS) is now available. Some screens have been re-designed for greater clarity and changes have been made to speed up the responsiveness. This revision includes a blood monitoring facility, a new biologics dataset and an updated drug dictionary. The number of medications that can be listed and stored for each patient has been increased for better long term tracking of treatments, and the reporting function has been boosted by the addition of three further standard reports.

September will see the implementation of the new PMS in the following trusts: Bedford Hospital, The Princess Alexandra Hospital, Royal Berkshire and St George's Healthcare NHS Foundation Trusts and the five sites using version 1 will be upgraded by the end of the year.

Many thanks to all the clinicians who advised on the design changes and tested the system, especially Stephen Grainger, Matt Johnson, Fraser Cummings and Stuart Bloom.

Regional meetings in November

Following on from the successful regional meetings run by the IBD Audit team in March, we plan to run a series of Registry meetings in November in Birmingham, Warrington, London, Darlington, Cardiff and Taunton. Scotland will have its own meeting in early 2016. The meetings will afford clinical teams time to review their service development goals, and members of the Registry team will advise on how to get started with the Registry, in preparation for next year, when it will become the vehicle for the collection of national audit data. To find out more about your nearest meeting, please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Webinar invitation

If you have an issue around local implementation or participation that you'd like to discuss with the Registry team before November, please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it and we will arrange a call or Webinar to address your local issues.

A reminder about consent

We advise all IBD teams to start planning for consent now. Information leaflets, consent forms and clinic posters can be downloaded from the IBD Registry website, or by contacting Simone Cort at the BSG, who can also send you hard copies of the clinic posters.

To find out more about patient consent and the IBD Registry you can download Information On Patient Consent For Participating Hospitals from http://ibdregistry.org.uk/resources/consent-materials/ or watch this short film https://www.youtube.com/watch?v=6USTnKO4TJo.

IBD Audit and the Registry

The IBD Audit programme based at the Royal College of Physicians, the IBD Registry and the British Society of Gastroenterology are currently working together to plan a long term strategy to embed the delivery of audit and quality improvement into the IBD Registry. More detail will follow in the autumn.

In the meantime the biological therapies audit continues to collect data which will be reported on in 2016; this audit remains on the quality accounts list.

For further information please contact 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 – August 2015

New sites

In July four new sites had the IBD Registry PMS installed. Dorset County Hospital NHS Foundation Trust, Royal Free London NHS Foundation Trust (paediatrics IBD team), Hampshire Hospitals NHS Foundation Trust and Wrightington, Wigan and Leigh NHS Foundation Trust.

Consent and the IBD Registry

Capturing electronic clinical data onto a hospital system such as the PMS or the web tool is a primary purpose for that information so this doesn't need specific consent from the patient.

Submitting the same data to an audit or registry for service evaluation is a secondary use and may need patient consent if it includes any patient identifiable data. Since the data submitted to the IBD Registry does include some patient identifiable data (so we can spot duplicate entries when a patient is seen at different hospitals, for example) participating IBD teams need to get written consent from each patient before sending their data to the Registry.

To help IBD teams get up and running with the Registry, we applied for and were granted an exemption (called a s251 exemption) which allows IBD patient data to be submitted to the Registry unless a patient opts out. This is time-limited and expires in May 2016. After this time, hospitals will only be able to submit data to the Registry for those patients whose consent has been given and recorded. These arrangements apply to England and Wales, and we aim to have similar processes set up for Scotland and Northern Ireland in the near future.

We advise all IBD teams to start planning for consent now. Patient information could be sent with clinic appointment letters and consent forms signed in the waiting room. Or a mailing could be organised with a covering letter from the IBD Clinical Lead explaining why the hospital encourages patients to give their consent.

Information leaflets, consent forms and clinic posters can be downloaded from the IBD Registry website, or by contacting Simone Cort at the BSG, who can also send you hard copies of the clinic posters.

To find out more about patient consent and the IBD Registry you can download a more detailed document, Information On Patient Consent For Participating Hospitals from http://ibdregistry.org.uk/resources/consent-materials/ or watch this short interview in which Richard Driscoll was asked to explain about the IBD Registry and Consent to patients - https://www.youtube.com/watch?v=6USTnKO4TJo

IBD Audit and the Registry

The IBD Audit programme based at the Royal College of Physicians, the IBD Registry and the British Society of Gastroenterology are currently working together to plan a long term strategy to embed the delivery of audit and quality improvement in the IBD Registry. More detail will follow in the autumn.

In the meantime the biological therapies audit continues to collect data which will be reported on in 2016; this audit remains on the quality accounts list.

For further information please contact 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

Crohn's and Colitis UK Research Awards 2016

Applications are invited for grants to be awarded in 2016 by Crohn’s and Colitis UK. Research Projects may be directed towards:

  1. Medical - any aspect of Inflammatory Bowel Disease relevant to a better understanding of the causes or mechanisms of IBD or better treatment for IBD patients.
  2. Living with IBD – any aspect of the social and psychological impact of Inflammatory Bowel Disease including research into ways of helping patients and their families to live with IBD.
  3. Health Services – research with the potential to improve the services provided to the UK’s IBD community and to drive up standards of care for patients with IBD.

Funding for any one project is normally subject to a maximum of £120,000 over a period of up to three years. Applications for funding of pilot studies are also encouraged.

Closing date for applications is 4pm on Monday, 5th October 2015.

An application form and information for applicants can be downloaded from www.crohnsandcolitis.org.uk or contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it or on 01727 734 468.

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

 

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