Sections News

IBD Registry: January Headlines

  • 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 This e-mail address is being protected from spambots. You need JavaScript enabled to view it
  • The RCP audit now has closed so IBD teams need to export their data if they 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

UK IBD Registry ends year on a high note

We approach the end of the year with 60 sites actively participating in the IBD Registry, and over 21,000 patient records submitted. 80 sites in total have a 'live' system for data capture, and 21 additional sites are in the process of setting up, so we expect patient numbers to increase steadily.

Members of the Registry's industry working group have generously contributed to a fund specifically to support sites with data entry. For more information please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it by 20th January 2017.

Many thanks to our colleagues at AbbVie, Allergan, Dr Falk, Janssen, Napp, Pfizer, Takeda, Tillotts and Vifor for their contributions to this fund. 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

*Grants may be higher depending on the number of sites applying.

 

Latest IBD Registry data submission and site numbers

As we approach the end of the year, the Registry team would like to thank all the IBD teams who have now joined the project for all their hard work. We've reached an important milestone in November with 20 sites now having submitted data, giving a total of 17,328 records. More records will be uploaded in December as we now have 44 teams who have completed their registration with NHS Digital. If you have data you’d like to upload and need any help at all please contact Mark at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Altogether, 176 IBD teams from across the UK have registered to participate, and there are 78 sites 'live' with a system for data capture, using a variety of different data entry methods (e.g. web tool, patient management system, local system etc). If you're in one of the teams that haven't yet registered please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it to find out more about joining in.

IBD Registry Update: Upload your patient data in November!

We are asking all sites that have any patient data live on a Registry-compatible system to upload their patient data to NHS Digital (HSCIC) during November. This is really important as the BSG Trustees will be assessing BSG support for the Registry/Audit in 2017 when they have their December 2016 meeting and we want to be able to show the good progress the Registry is making by reporting the maximum possible numbers of sites contributing and the numbers of patients in the central Registry. Every upload, even if the patient numbers on your database are relatively low, will help. Please ask for our support to do this if you need it - This e-mail address is being protected from spambots. You need JavaScript enabled to view it

IBD Registry: October Update

The final report produced by the UK IBD audit at the Royal College of Physicians has been published and data collection to support audit and quality improvement is moving to the IBD Registry. Teams can participate using a choice of data entry systems including existing local systems. Being part of the IBD Registry will give teams:

  • Local data to manage their biologics patients and IBD service more effectively
  • The chance to be part of ongoing national audit of the safety and appropriate use of biologics and biosimilars

In time the Registry will become a unique resource for real-world clinical effectiveness and health economic studies in IBD care. The goals for 2016/17 are:

  • Transfer data collection from the RCP biological therapy audit web tool, which will be closing, to the IBD Registry.
  • Develop a near-complete UK Register of IBD patients on biologics by the end of 2017

Over 160 teams have now registered to be part of the project. If you haven't registered yet and would like to, please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it

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