Why participate in the IBD Registry?
For hospital IBD teams
The IBD Registry collects ongoing, longitudinal clinical data from people with IBD. This forms part of our national IBD database – a unique data resource designed to:
- Support local and national clinical quality improvement and audit
- Enable efficient and transformational research
- Empower patients to help grow the IBD knowledgebase
Our goal is to collect clinical data from IBD hospital teams that is already available (avoiding double or duplicate data entry). We then put that data to as many good uses as possible. We can also collect data from patients directly.
We are authorised to collect clinical data for non-research purposes by the Confidentiality Advisory Group (CAG). We also have approval from the Health Research Authority (HRA) to form an ethically-approved research database where we have patient consent.
More than 100 NHS hospitals have supported the Registry through uploading clinical data. We can accept data from hospitals in all 4 UK nations.
“We recognise the importance of developing and improving IBD care, through expanding the collective knowledge and awareness of the disease, and by being part of the IBD Registry we are able to do this.
The quarterly reports we receive from the IBD Registry have prompted discussions and action plans around how to more effectively engage with data upload and use these insights to improve care.”
IBD Team, Royal United Hospitals in Bath
What’s changed at the IBD Registry?
Over time, the IBD Registry has evolved. We now offer:
- An ethically-approved research database: In February 2022 we received Health Research Authority (HRA) approval as a research database. This data can be linked for greater insights and our goal is to drive efficient research through discoverable cohorts.
- New version of consent, direct to patients: We are now able to capture consent directly from patients through our new e-consent form (paper forms are also available). We are keen to work with IBD teams to communicate to their patients about joining the IBD Registry.
- Faster upload for more valuable insights: Our new Data Access Portal allows rapid data upload. You can also access your list of consented patients daily. We then work to transform your data into actionable information to support you in local and national clinical quality improvement programmes.
- Data capture in all 4 nations: Our revised consent process enables us to capture clinical data from IBD teams in Scotland and Northern Ireland for the first time. We already have patients consenting direct to the IBD Registry from all 4 nations. If your team is not yet participating in the Registry, find out how to join here.