FAQs for IBD teams
Before reading these FAQs, please take a moment to look through the Closure FAQs
Click on the frequently asked questions (FAQs) from IBD teams below to see the latest response from the IBD Registry. We will continue to update this page with new questions and the latest information.
Page last updated: 6 Feb 2024
Registry Quarterly Reports
When will I receive a report based on the most recent data my team submitted to the Registry?
We have completed receiving data for the current data collection year and are preparing the final individual quarterly reports for 2023-24. We plan to deliver these by early March 2024. For IBD teams in England participating in the Quality Accounts programme, this is also the report to confirm to their Trust their participation with the IBD Registry.
Who in my IBD team gets the reports, and how do I get added to the list?
The named IBD team contacts at your hospital receive the report. Please contact us if you would like to be added to the list for your hospital.
Submitted Data
What will happen to the data that has been collected ?
We are hugely grateful for the efforts that IBD teams have made over the years and are actively seeking a secure new home for the data we hold. We will ensure all our stakeholders are kept informed of progress.
Data capture tools
What will happen to the WebTool, including the clinical data held in it?
The WebTool is run by the IBD Registry, and is being de-commissioned from the end of March. We will be in touch with all clinical teams using the WebTool about return of their clinical data to them. The databases will be securely deleted as part of the WebTool decommissioning.
Meanwhile, it is possible for you to use the Worklist and Extract functions of the WebTool to download data on the patients you have entered. We will provide guidance about how this can be done.
If you would like a copy of your data, we will make this available for you to download on our Data Access Platform (DAP). If you do not already have a login to our DAP please use our online form to receive login details.
I wish to review the data on my WebTool but have lost my login details
Please contact [email protected]
What will happen to the PMS (Patient Management System/Infoflex) ?
The PMS is owned by another organisation (Civica Ltd). If you are using the PMS, this continues unchanged. The PMS is sometimes called InfoFlex, after the name of the software developed by CIMS (Chameleon Information Management Systems), who sold it about a year ago to Civica Ltd.
The PMS was designed around the IBD Registry’s IBD dataset standard, and so provides a structured approach to collecting clinical data in IBD. For the future, we would anticipate that your IBD clinical system will remain useful to your service in supporting the management of your patients, because of the structured records you have collected.
Should I continue to enter data into the IBD module of my Trusts’s clinical system?
This will be a decision your IBD team or Trust will want to make, but even though you will not be submitting data to the Registry going forward, we would anticipate that your IBD clinical system will remain useful to your service in supporting the management of your patients, because of the structured records you have collected.
Consent, s251 and the national data opt-out (NDOO)
How to view your consent materials?
To view our materials on consent, click here.
If a patient withdraws their consent, what happens to their data?
If a patient withdraws their consent, the Registry will ensure that their data is removed from our database within a reasonable timeframe.