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.

IBD Registry and biologics audit data submission deadlines:

Next: 3rd April 2020. All dates are Fridays

3rd April 2020
10th July 2020
9th October 2020
8th January 2021
16th April 2021
9th July 2021
8th October 2021 

The Registry dataset

The current specification for the Registry dataset including the submission to NHS Digital can be downloaded here. 

We have defined the Registry dataset in three Levels to  accommodate different approaches that clinical teams may have in capturing data:

  • 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.

The PMS and the Webtool

The PMS and the Webtool are designed with built-in extract functions to extract the data in this Registry-compliant format.

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.

NEW: IBD Registry, patient consent and the National data opt-out - FINAL  (PDF 150KB)  

IBD Registry Patient information leaflet – April 2019Download here
IBD Registry Large Font/Accessible Patient information leaflet – April 2019Download here
IBD Registry Adult consent form – May 2018Download here
IBD Registry Paediatric consent form – May 2018Download here
IBD Registry A4 poster - May 2018Download here
IBD Registry patient consent guidance for hospitals (England and Wales) - August 2017Download here




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