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 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.
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.