Sections News

IBD Registry News – June 2017

IBD REGISTRY SYMPOSIUM AT BSG IN MANCHESTER

Join us in Manchester on Wednesday 21st June at 4.30-6pm for the first presentation of the biologics KPIs, as well as the latest news on research projects using the Registry. Chaired by Stuart Bloom and Barney Hawthorne, speakers include David Barker, Fraser Cummings, Mark Allan, Keith Bodger and Angel Castro Silva.

HELP SHAPE THE IBD REGISTRY REPORTS - LIVERPOOL UNIVERSITY SURVEY

Funded by Crohn's & Colitis UK, Keith Bodger and his team in Liverpool are working with the UK IBD Registry to develop data reports for IBD teams. The aim is to produce site level information to support local service planning, delivery and quality assurance. They'd like to get your views on some pilot data reports, and hope to present feedback during the IBD Registry Symposium at the BSG on Wednesday 21st June. Please follow the link below for more information and to provide your feedback on the draft reports: https://www.surveymonkey.co.uk/r/UKIBDR-Reporting

IBD REGISTRY 2017 ROADSHOW

The 2017 Roadshow has visited Exeter, Cardiff, Warrington and Darlington, reaching over 65 IBD doctors, nurses, audit leads and other team members. With a focus on practical information and action planning, the meetings are a chance to think and plan away from the hospital, as well as a chance to share experiences and tips. Delegate feedback suggests some key themes:

  • Seeing how the Registry can help teams to generate data that's useful locally, to drive service development or improve quality.
  • Getting a good understanding of different types of data entry systems.
  • Finding out how to get started, and where to find help when you need it.

There are still some places at Birmingham on Friday 9th June and the meeting is free to attend thanks to generous industry sponsorship, so if you'd like to join us, register now at http://ibdrroadshow2017.eventreference.com/

QUARTERLY DATA SUBMISSION

The next data submission deadline is 30th June, so please make sure that you submit all of your data for the period up to 31st May. If you need any help at all in preparing for this, or if you have not yet registered with NHS Digital, please email This e-mail address is being protected from spambots. You need JavaScript enabled to view it

DATA ENTRY GRANTS - DEADLINE EXTENDED TO 17TH JUNE 2017

The deadline for data entry grant applications has been extended to 17th June, but priority will be given to those who have applied by the initial deadline of 17th May. Please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it for an application form. Applications need to be returned by 17th June 2017.

CALDICOTT GUARDIAN OPPORTUNITY

The Registry has a vacancy for a Caldicott Guardian to support all Information Governance aspects of the project. Please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it for more information.

DATES FOR YOUR DIARY:

  • FRI 2nd JUNE LONDON ROADSHOW
  • FRI 9th JUNE BIRMINGHAM ROADSHOW
  • WED 21 JUNE: IBD REGISTRY SYMPOSIUM AT BSG ANNUAL MEETING
  • AUTUMN: GLASGOW ROADSHOW
  • DECEMBER : Publication of the IBD Registry initial report

IBD Registry News: May

The latest news from the IBD Registry can be found at the further information link below.

Updates include:

  • Last remaining places for ibd registry 2017 roadshow!
  • New data visualisation tools for quality improvement
  • Registry participation
  • Quarterly data submission
  • Data entry grants
  • Converting your exported RCP Biologics Audit data into usable records
  • IBD Registry Symposium at BSG Annual Meeting in Manchester
  • Using data to improve healthcare - free, online course
  • Quality improvement news
  • Industry support
 

Transition - moving to adult care in IBD

Crohn's and Colitis UK has written a brand new guide for young people with Inflammatory Bowel Disease about moving to adult care titled Transition: Moving to Adult Care - A guide for young people with IBD.

Transition to adult care if you're a teenager with Crohn's Disease, Ulcerative Colitis or another form of Inflammatory Bowel Disease (IBD) is an important milestone. This often happens around the age of 16 and 18, but it can sometimes be earlier or later. It is important for young people to find out more about what's involved and how they can get ready for the change.

Crohn's and Colitis UK has written this new booklet with the support of young people who have shared their stories with us and healthcare professionals, so we could give tips to make transition easier.

See more at: https://www.crohnsandcolitis.org.uk/news/new-booklet-transition-moving-to-adult-care

IBD Registry News: April

QUARTERLY DATA SUBMISSION

The next quarterly data submission deadlines are 31st March and 30th June. If you need any help at all in preparing for this, please contact Data Manager Mark Allan by emailing This e-mail address is being protected from spambots. You need JavaScript enabled to view it

REGISTRY PARTICIPATION

Participation continues to grow, with 91 sites now set up to enter data into the IBD Registry, and over 24,900 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 This e-mail address is being protected from spambots. You need JavaScript enabled to view it

TRUSTS IN ENGLAND – EARLY BIRD DISCOUNT ON AUDIT SUBSCRIPTIONS EXTENDED TO 30th APRIL

We've had an encouraging response to the request for subscriptions from Trusts in England to help the BSG maintain the Biologics Audit now that NHS England funding has been withdrawn.

At £2,500 per annum, the subscription is significantly less than the cost of one patient on biologics treatment for a year. Subscribers will receive benchmarked quarterly reports on the Biologics Audit KPIs focusing on quality improvement topics recommended in the last RCP Biologics Report. Later in the year, it is our intention to include reporting of HES data in relation to the Biologics data.

The BSG has offered to reduce the cost in the first year by 40% if a Trust provides a purchase order by 30th April 2017. We have written to the Chief Executives of all 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 teams have contacted us about submitting data to the IBD Registry if their Trust decides not to subscribe to the Audit. At present, 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 This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 

IBD Registry 2017 roadshow dates announced

  • Mon 15th May Exeter
  • Thurs 18th May Cardiff
  • Fri 19th May Sheffield
  • Mon 22nd May Warrington
  • Tues 23rd May Darlington
  • Fri 2nd June London
  • Fri 9th June Birmingham
  • Autumn 2017 Glasgow

A series of half-day meetings to support clinical teams as they join the IBD Registry. The sessions provide protected time for teams to learn about the Biologics Audit and QI programme using the IBD Registry, and to develop local plans for Registry adoption. Each meeting will be tailored to local needs and aim to provide information, support and hands-on guidance. Experts from the 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. Free to attend due to generous industry sponsorship.

 

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