for sites and clinical teams
be part of the clinical contribution of the IBD data that can improve patients’ lives
To help IBD teams (to whom we are grateful for their time and work in submitting data) we have put together a page of hints and tips to make the process of submitting data easier. 1 Check your login before the deadline. If you use the WebTool periodically rather than...
Why join the Registry?
Benefits for IBD teams and IBD patients
- Track and measure improvements to patient care and treatment
- Fulfil the IBD Standard for data submission to the IBD Registry
- Build the picture of high-risk medications (steroids and biologics) usage nationally
- Contribute to an IBD dataset that can underpin research
- Add to the knowledgebase about IBD
National analysis plus site-specific reports
A quarterly report of our most recent analyses, including your site’s submitted data in comparison to national data, including:
- disease phenotype
- consent levels
- biologics usage
How do you collect data ?
Data collection as part of routine clinical care
The IBD Registry understands that clinical teams are busy teams. Our goal is to data capture as part of routine clinical care, and wherever possible, avoid data re-entry. For this, we have a Data Submission Framework which allows the Registry data collection mechanism to be embedded in your hospital system (even if you use spreadsheets) and submitted to us.
We are preparing (April 2021) to release an upgrade to the Dataset (“2021_K”) and also the Data Submission Framework to match. We are working closely with the tool/system providers in reviewing our dataset to ensure it works as easily for clinical teams as possible.
To help IBD teams who want a system they can use for in-clinic support, we have designed a secure WebTool just for IBD teams. This has Registry data collection built-in.
For IBD teams with Trust-wide systems, the data can be collected directly from these. The PMS (from CIMS/Civica) has Registry’s data collection directly built-in. We have built connections for Trusts with EMIS and EPIC systems, and are working with other hospitals to connect their systems.
Joining the Registry
Let us know you are interested!
- Discuss with us which is the best system for you to use for data collection
- Approach your IG Team and/or Caldicott Guardian for data sharing approval
- Approach your local IT team for support (if required)
- Register with NHS Digital (for England and Wales) for data upload
We have a full set up pack that we can send you with full details.
What else to think about ?
- Think about a Clinical Champion who can drive local Registry implementation
- Plan your team approach to data capture (not just one person!)
- Set your own realistic data capture goals
Since we started in collecting data in May 2015, 75 sites have participated in the registry adding a total of over 51,000 patient records to date.
We’ve sent out almost 500 local reports to sites in total based on our specialist biostatistic team analysis of the data submitted. In these years, we’ve added in Biologics as a specialist data set and also PROMS (Patient Reported Outcome Measures).
We’ve listened to feedback from clinical teams and refined the KPIs to more accurately reflect realistic practice.
IBD Registry Ltd is a not-for-profit company limited by guarantee - Company Number 11197749.
Our Registered Address is 3 St Andrews Place, Regent’s Park, London NW1 4LB. VAT Number 291683766.