Data Capture Options
The Registry has been set up so that all IBD teams in the UK can take part, irrespective of what system is used in their hospital (or not).
There are three data entry options to suit different local conditions and resources. All use the same Data Submission Framework which allows the Registry data to be submitted indpendent of the system being used. The goal of the Registry is to support data capture via systems as part of routine clinical care, to avoid data re-entry by clinical teams.
Approaches to data entry
One misconception regarding the IBD Registry and data entry is that IBD teams must enter all their IBD patient data on the system as soon as possible. This is not logistically possible nor is it a reasonable expectation of busy IBD teams. The IBD Registry advocates a ‘little and often’ approach to data entry; this is a much more manageable and attainable process for IBD teams and helps secure the long-term sustainability of data entry.
The IBD Registry has a few examples of how IBD teams participating in the Registry have tackled data entry:
- Enter the first two or three patients each day onto your chosen data entry system.
- Initially only add the biologics KPI data for new biologics patients, once they are all on the system start to enter existing patients.
- Acquiring data administrative support from an audit department can be mutually beneficial as the Audit department can meet their audit requirements. One way to utilise an audit team is to record biologics KPIs data on paper based pro formas which are passed to the audit team to enter into your data entry system.
Using the IBD Registry Web Tool
Using the InfoFlex PMS
Using EPIC or EMIS
Using any other system
Consent and Patient Information Materials
GDPR-ready materials available below. Please be advised the changes are for GDPR compliance only.