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 the Health and Social Care Information Centre (HSCIC). 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 the HSCIC 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 3725 6150.
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...
Quality Accounts in England We are delighted to announce that the IBD Registry biologics audit has been included by NHS England in Quality Accounts for 2018/19. We encourage all sites to participate in the biologics audit, as it will help to ensure that IBD patients...read more
The IBD Registry is looking for an exceptional individual to help drive the next phase of its growth, as it expands to become a new legal entity, founded by the British Society of Gastroenterology (BSG), Crohn’s and Colitis UK and the Royal College of Physicians...read more
Data and reporting Milestone HES reports sent to sites this week Earlier this week, HES reports were sent to all Registry sites that have submitted data to NHS Digital, fulfilling a long-held Registry aim to make information work better for patients, clinical teams...read more
2017 has been a pivotal year in the development of the IBD Registry. Continued hard work from IBD teams across the country has resulted in 33,321 patient records being uploaded by 53 sites. Thanks to an idea from our Industry Working Group, we set up a data entry...read more
The IBD Registry team have realised a long-held ambition to use routinely collected hospital episode statistics (HES) data to supplement the clinical data collected by sites, in a ground-breaking initiative led by Keith Bodgerread more