Your data and the cancer registry

When a person is diagnosed with cancer, or a condition that might lead to cancer, some information about them is collected by a cancer registry. This is a database of information on cancer diagnoses and treatment.

There are 4 cancer registries in the UK. They are run by the following organisations:

• in England, the National Disease Registration Service (NDRS)
• in Scotland, Public Health Scotland
• in Wales, the Welsh Cancer Intelligence and Surveillance Unit
• in Northern Ireland, the Northern Ireland Cancer Registry.

Hospitals automatically send information to a cancer registry. You do not have to do anything to have your information included.

You have a right to choose not to have information about you, or a child you care for, stored in the registry. This is called opting out. Opting out will not affect the care or treatment that you receive. But the more data the cancer registry collects, the more accurate and useful this is. The aim is for the cancer registry to contain data on every cancer patient if possible.

If you decide to opt out, you need to tell the cancer registry in your area of the UK. For information about doing this, ask your healthcare team or use the following links:

• in England, the National Disease Registration Service (NDRS)
• in Scotland, Public Health Scotland
• in Wales, the Welsh Cancer Intelligence and Surveillance Unit
• in Northern Ireland, the Northern Ireland Cancer Registry.

We know that people have worries about privacy and data security. There are strict rules about how cancer registry information is stored, accessed and used.

Information about health is sensitive, so by law it has to be kept under the highest levels of security.

The risk of a security breach involving the cancer registry is extremely small. The cancer registry is held on secure computer databases with tightly controlled and restricted access.

The information is treated with a high level of confidentiality. The cancer registry publishes public reports and statistics, but these never identify any individual person.

If people or organisations, such as the NHS, want to access information in the registry, there is a careful legal process to go through. The information can only be used for health and social care planning and research.