Sections News

IBD Registry News: September 2017

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

  • Drug Dictionary Medication Update
  • Registry Participation
  • Quarterly Data Submission and Reports
  • IBD Registry announces Field Support Programme
  • Caldicott Guardian Opportunity
  • IBD Nurse & SpR Programmes

RCGP IBD Toolkit Official Launch

The Royal College of General Practitioners (RCGP), in partnership with Crohn's and Colitis UK, has launched a IBD toolkit for GPs and healthcare professionals.

RCGP's Clinical Champion for Inflammatory Bowel Disease, Dr Kevin Barrett, who developed the toolkit together with the patient representative Rachel Fowler and the project's steering group, comments "Inflammatory Bowel Disease affects at least 1 in 250 of the UK population and the prevalence is rising. Early diagnosis, managing flares, supporting patients to stay well and monitoring long-term risks are all vital aspects of care. The RCGP's IBD toolkit is designed to help GPs better identify and manage IBD, and provide education resources for healthcare professionals and patients alike."

Jackie Glatter, Health Service Development Manager at Crohn's and Colitis UK said, "GPs play a really important role in identifying people with suspected IBD and supporting these patients throughout their lives, in conjunction with the secondary care team. We are delighted to be working in partnership with the RCGP to provide resources for GPs and to highlight the information and support we can provide for people with IBD."

The IBD toolkit (www.rcgp.org.uk/clinical-and-research/toolkits/inflammatory-bowel-disease-toolkit.aspx) has been produced as part of the College's Spotlight Project on inflammatory bowel disease, which will be delivering a number of free workshops and further learning resources for GPs throughout 2017/2018.

For more information on the work of the College's Clinical Innovation and Research Centre, and for tools to support your practice, please visit http://www.rcgp.org.uk/CIRC

IBD Registry News: August 2017

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

Updates include:

  • 2016 IBD Registry roadshow wins award
  • IBD Registry 2017 roadshow resources now available
  • Caldicott Guardian opportunity
  • Registry participation
  • Quarterly data submission & reports
  • IBD Nurse Excellence Programme

IBD Registry News – July 2017

IBD Registry Symposium at BSG2017 in Manchester

A very successful session was held at the BSG Meeting with a broad Registry update from Fraser Cummings, a patient perspective from David Barker including a video message from Carrie Grant, an introduction to the new Data Visualisation charts on the Registry Web Tool from Mark Allan and interim findings from the Anaemia Service Evaluation Study being conducted using the Registry Web Tool.

Perhaps the most eagerly awaited presentation was from Keith Bodger providing an insight into the analysis and reporting that is now becoming possible by combining the Registry and HES data. Keith also presented a summary form the recent survey on how best to present Registry and HES data back to sites and thanked everyone for their responses.

The presentations from the Registry session will be made available on the IBD Registry Website over the next few weeks: www.ibdregistry.org.uk

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.

IBD Registry 2017 Roadshows

The 2017 Roadshow has now visited 6 cities in England and Wales, reaching over 123 IBD doctors, nurses, audit leads and other team members from over 40 trusts or health boards. With a focus on practical information and action planning, the meetings provided a chance to think and plan away from the hospital, as well as a forum to share experiences and tips. The most common challenges and proposed solutions can be found via the further information link below.

A meeting is planned for Scotland later in the year, and you can register your interest at ibdrroadshow2017.eventreference.com/

Quarterly Data Submission

Thank you to everyone who uploaded data to NHS Digital at the end of June. The next data submission deadlines are 30th September and 29th December. 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 . Once you are registered with NHS Digital, please make your first data submission as soon as possible to test the process and familiarize yourself. Please do not wait for the deadline date to do this as it is difficult for the Registry and CIMS Support services to resolve any technical issues at the last minute.

You will not cause any problems by uploading data more frequently. The data deadline is the point at which NHS Digital will create a new extract of the complete dataset, pseudonymise it and provide it to the Registry for analysis.

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

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