Information for patients

What is the NHS Proton Registry?

If you have been referred for NHS proton beam therapy, whether or not you went on to have it, information about you is likely to be held in the NHS Proton Registry. This includes patients treated at The Christie in Manchester, at University College London Hospitals, or abroad through the NHS Proton Overseas Programme.

The Registry helps the NHS check that proton beam therapy is safe and effective, including looking for side effects that can appear years after treatment. It also supports approved medical research. Information about people who were referred but not treated helps the NHS check that everyone who could benefit has fair access to treatment.

Proposed photograph: A proton beam therapy treatment room, showing the treatment couch and gantry, with no people in view

What information is held?

The Registry holds information about you, such as your NHS number, date of birth and postcode when you were referred. It also holds information about your diagnosis, your treatment and how you got on afterwards. It does not hold your name. You can see a full description on the our data page.

Who can see my information?

Very few people. Most uses of the Registry produce only statistics that cannot identify anyone. When an approved research project needs individual records, it receives coded records without your name, NHS number or address, normally only inside a secure computer environment. Read more about how we protect data.

What are my choices?

You can object to your information being used.

• National data opt-out. You can set or check the NHS national data opt-out at nhs.uk/your-nhs-data-matters.
• Objecting directly to the Registry. You can email us at the-christie.nhsprotonregistry@nhs.net or write to us at NHS Proton Registry, Room 51.3.60, Proton Beam Therapy Centre, Oak Road, Manchester, M20 3DA.

The legal basis

Questions?

See our privacy notice or contact us.