Data Submission Framework
How to submit your IBD data to the Registry
The IBD Registry encourages all hospitals in the UK to join the Project by collecting and submitting the Registry data on their IBD patients. Each participating hospital will receive a summary report on their data compared to the aggregated data received from all hospitals.
For information on the different systems for collecting data on your IBD patients, click here. Please note that you do not have to be using a fully functioning patient management system in order to participate. Many hospitals have some current or historic data held in spreadsheet format or in older database systems. Provided these can export data in CSV format, the patient data can be submitted. The Registry team can help you with this.
Whichever electronic system a hospital uses, the process for submitting data to the Registry is the same. 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.
The Data Submission Framework is a tool that hospitals using an existing EPR system will require to convert their data for Registry upload. The document below can be used by your hospital IT team to convert the data stored on your EPR into a compatible format for Registry upload.
The data must be submitted in the required CSV format and the current specification for the dataset and submission to NHS Digital can be downloaded here.
We recognise that for many hospitals, beginning to collect current demographic and clinical data on their IBD patients is a challenge and hospitals have taken different approaches. Some have aimed to collect minimal data on all their IBD patients to identify their complete population of patients. Others have selected a specific group of patients and aimed to collect a wider set of data on that group first. Others have focused on the patients most frequently attending their clinics.
For any questions about the Data Submission Framework please contact the Registry support team on [email protected] or 020 3393 3969.
The Registry can accommodate all of these approaches and has defined the Registry dataset in three Levels.
- 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 IBD Standard D2. 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.
Find out more about:
Continuing its mission to improve the care that people with IBD receive, the Royal College of Physicians is offering IBD teams an opportunity to participate in a new quality improvement collaborative, consisting of three 1-day learning sessions and supported action...read more
Following the establishment of IBD Registry Limited as an independent not-for-profit company, we have moved offices to: The IBD Registry The Ebbisham Centre 6-7 Derby Square EPSOM KT18 8AG Telephone (unchanged): 0203 393 3969 Contact (unchanged):...read more
If you’re coming to the BSG Annual Meeting in Liverpool next week, do come and say hello to us – we’re at stand B58 in the exhibition.read more
As we’re sure you know, the General Data Protection Regulation (GDPR) comes into force on 25th May.
This newsletter is to let you know what’s changed at the IBD Registry to be compliant with the new regulations.read more
I have been on board as the CEO of the IBD Registry for just two weeks now, but it has only taken that short time to get a real sense of the goodwill that people have for the Registry, as well as the dedication of the clinical teams in entering data, and the hopes and...read more