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).
Approaches to data capture
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 independently 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.
The IBD Registry understands that clinical teams are busy teams. To fit in, we advocate a ‘little and often’ approach to data entry; this is a manageable and attainable process for IBD teams and helps secure the long-term sustainability of data entry.
Good practice examples from IBD teams on data capture:
- Enter the first two or three patients each day onto your chosen data entry system.
- Be clear about the Registry dataset you are aiming to capture and capture that consistently. Capturing a small dataset well is better than a big data set infrequently.
- 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
formaswhich are passed to the audit team to enter into your data entry system.
NEW: IBD Registry, patient consent and the National data opt-out - FINAL (PDF 150KB)
|IBD Registry Patient information leaflet – April 2019||Download here|
|IBD Registry Large Font/Accessible Patient information leaflet – April 2019||Download here|
|IBD Registry Adult consent form – May 2018||Download here|
|IBD Registry Paediatric consent form – May 2018||Download here|
|IBD Registry A4 poster - May 2018||Download here|
|IBD Registry patient consent guidance for hospitals (England and Wales) - August 2017||Download here|
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