Data capture and submission
We invite quarterly uploads of a site’s data on the dates shown in the box on the right. These are designed to be as close as possible to each quarter end.
Our Data Access Portal allows us to take data at any time. We appreciate you may have local reasons for needing to upload data outside of these dates. Please get in touch if you would like to do this.
You can also download your list of consented patients from the Data Access Portal at any time. There is more information about our consent process here.
If you have recently signed up to our new Data Access Portal, or are about to do so, we have produced a short video guide that IBD teams can use anytime to remind yourself of the data submission process, or alternatively you can download our short guide to uploading data. We also have further guidance on preparing your files to comply with the national data opt-out.
IBD Registry and biologics audit data submission deadlines:
Friday 12 January
Friday 26 April
Friday 12 July
Frday 11 October
Friday 10 January
The IBD Registry dataset
The IBD Registry is designed to be systems-agnostic. It doesn’t require any dedicated tool (you don’t have to have our WebTool) and it can work with any clinical system. We do this by having an IBD Registry dataset that your system can work with.
The level of data you can provide depends on your clinical system and the way your clinics run. We will work with you and your IT team to find the level that fits best with your clinical processes. As a guide, we suggest there are three different levels of data:
- Your IBD patient population: a minimum number of essential data items describing patient demographics and disease phenotype (the starting point for most hospitals in creating a local register of their IBD patients)
- Clinical Quality Improvement: additional data items enabling participation in evaluation through the national key performance indicators (KPIs) for IBD
- Research: a richer clinical dataset that might be available from hospitals using an electronic patient management system, such as EPIC, EMIS, PMS or IBD Registry WebTool.
You can download a summary list of our national IBD data items here.
The IBD Registry WebTool
We can offer teams use of our IBD Registry WebTool for a minimal fee to help to cover the cost of providing this. The WebTool is a secure web-based clinical support system, based on the same software as the InfoFlex IBD Patient Management System.
The WebTool enables data to be captured at the point of clinical contact with patients and provides immediate access to a summary of the patient’s disease and current care. It can generate clinically useful outputs and basic service profiling information. Find out more about the IBD Registry WebTool here.