Protecting your data


Protecting your data during the IBD closure process

We continue to maintain strict data security measures including encryption to protect all personal data until it is securely transferred or deleted.

We perform data protection risk assessments for all data processing, which includes the closure of the Registry. This process includes considering where we can use privacy-enhancing technologies at any point in the process, to better protect the confidentiality of personal records.

Our Closure FAQs provide more information.


How safe is my personal information?

Any data about you, such as your personal details and health information, are transferred to us securely and then held within electronic databases. These databases are in the UK and carefully controlled to make sure your information is secure. We meet strict NHS requirements for data security, and this is assessed every year.

Any analysis or research that uses IBD Registry data is done in a secure digital space where researchers and analysts can access the data safely. This space is called a Secure Data Environment.

The data we hold is de-identified before analysis or research can take place. This means we remove information which could identify you, such as your name or NHS number, and replace it with codes. This helps to protect your identity.

For more information, read our Patient Information Leaflet.