We now have information from 11 hospitals on 12,246 IBD patients (up from 8 hospitals and 8,037 IBD patients last quarter). 3 additional teams have registered with HSCIC, so are ready to contribute their data next time.
We’re making steady progress with participation and importantly, we have now successfully uploaded data not only from sites using the IBD Registry Patient Management System (PMS) but also sites using the Emis system, 2 web tool sites and one hospital using an in-house database, demonstrating the infrastructure for all the different data capture options. That infrastructure will also allow us to deliver other projects.
The Registry is currently recruiting a Data Manager who will enable us to begin providing a standard report back to sites when we receive their data. Meanwhile, Keith Bodger and his team at the Department of Biostatistics at the University of Liverpool are busy analysing the Hospital Episode Statistics (HES) for IBD as part of a Crohn’s and Colitis UK research project. We will begin to see some of the results of this analysis soon; later in the year we will extract the HES data for all patients in the Registry database and be able to analyse the demographics, clinical and HES history for that group.
Colleagues at the sites have worked really hard to upload their data on time – thank you to everyone. We are happy to help any IBD team that needs support to begin collecting and submitting their data. Please contact [email protected] if you have any queries at all.