Data Submission Framework

How to submit your IBD data to the Registry


The IBD Registry encourages all hospitals in the UK to join the Registry by collecting and submitting the Registry data on their IBD patients.

The map of hospitals participating with the Registry is on our home page.

IBD Registry and biologics audit data submission deadlines:

All dates are Fridays
Friday 8 October

Friday 14 January
Friday 29 April
Friday 8 July
Friday 7 October

The Registry dataset

The dataset specification for the Registry dataset is being prepared for a new release, including improving the submission pathway to the Registry.  The new dataset is in final review for feedback by tool/system providers, to ensure that the change process is kept as easy as possible for participating IBD teams.   

The current data submission framework is called 2019_J.  The new data submission framework is planned for introduction in mid 2021, and is called 2021_K.   We are working to make the transition are seamless as possible for clinical teams.

The Registry dataset has been designed in three levels to allow different tools. systems and approaches that  Trusts and clinical teams may have in capturing data.  These levels are included in the dataset review.

The current level specification is:

  • Level 1 – a minimal dataset of demographic data and IBD diagnosis.
  • Level 2 – the above data, plus additional clinical information including disease classification, details of surgery, admissions, cancer diagnosis and class of drugs.
  • Level 3 – a richer clinical dataset which can only be provided by a hospital using an electronic patient management system, such as the Registry PMS or Web Tool.

Level 1 data is the starting point for most hospitals in creating a local Register of their IBD patients and fulfilling the basic  Standard.  This Level 1 data has real value to the Registry because it enables the extraction of the Hospital Episodes Statistics (HES data) for all Outpatient, Inpatient and A&E attendances by these patients since 2005.  This information can then be reported back to the hospital in aggregated form.

Capturing the Registry datasets

You do not have to be using a fully functioning patient management system in order to participate!

Any system or spreadsheet…

Many hospitals have some current or historical data held in spreadsheet format or in older database systems. Provided these can export data in CSV format, the patient data can be submitted, especially at Level 1.  The Registry is keen to work with any sites who have data in other systems to support their Registry-compliant extract.  Please contact us to discuss and see how we can help.

Registry-compatible systems

The Registry’s Webtool has been designed with built-in extract functions to extract the data in this Registry-compliant format.

We understand that IBD clinical teams may already have clinical systems in place within their hospital. Our aim is wherever possible to capture data as part of routine clinical care.  We are working with external tool/system providers who also want to embed the data extraction process in their tools.

How to submit your data

It is critical that the data is submitted in the required Registry CSV format. Our submission framework pathway starts with sites sending their data to NHS Digital’s Clinical Audit Platform (our safe haven for pseudonymisation), and this means that data must be in the exact format for upload (as given in the Data Submission Framework)

Submission dates

We run quarterly uploads to NHS Digital, on the dates given in the box above.  These are designed to be as close as possible to each quarter end.

Submission process

This is a two-step process: each site has to extract its data locally and then send it to NHS Digital (via the Clinical Audit Platform).  As part of the setup for the Registry, you will have received a secure login from NHS Digital for access to their upload platform.

For a detailed guide see Resources for Hospitals

What happens next?

After each upload, our data analytics team collate and review the data, and start the analysis process. Part of this analytic work is to produce a local data report for each participating site, comparing local performance against a national benchmark.

Devolved nations

The data is sent to an NHS-approved data safe haven that pseudonymises the data and forwards it to the IBD Registry. In England and Wales, this is done via NHS Digital. The system to be used for hospitals in Scotland and Northern Ireland is currently being negotiated, but the dataset will be identical to that now in use in England and Wales.

For any questions about the Data Submission Framework please contact us.

IBD Registry Ltd is a not-for-profit company limited by guarantee - Company Number 11197749.