Patients

The information we are privileged to hold is crucial to improving the way patients are treated and services are provided, but we know it’s also highly sensitive and very personal. For this reason, security and patient confidentiality are at the forefront of everything we do. Our work uses data provided by patients and collected by the NHS as part of their care and support.

Patient information

Collecting and keeping patient data safe

Detailed information about how the National Disease Registration Service (NDRS) collects, records and keep the data of people with cancer, rare diseases or congenital anomalies safe.

Example of patient looking at smartphone

Opting out of disease registration

Find out how to request for your data to be removed from the National Disease Registration Service (NDRS) registers.

Using NDRS data for direct care

Find out more about how the National Disease Registration Service (NDRS) data can be used to support direct care.

Your rights and accessing your data

Find out about your rights and privacy, how you can see your data that we hold and how you can ask for it to be removed from the disease register.

Family history of cancer

Find information for people concerned about their family history of cancer

Do I need to register?

Find out if patients need to register their details with the National Disease Registration Service (NDRS).

Cancer quality of life survey

The cancer Quality of Life (QOL) is national survey run by NHS England, aimed at finding out how quality of life may have changed for people diagnosed with cancer.

Patient information leaflets

Patient information leaflets on disease registration are available through the National Disease Registration Service (NDRS).

Uses of patient data

Data stories

Data stories show how the National Disease Registration Service (NDRS) uses patient information to improve diagnosis and treatment of cancer, rare diseases and congenital anomalies.

NDRS bitesize video series

Explore a series of short video giving an overview of the National Disease Registration Service (NDRS) and our work.

Using NDRS data for direct care

Find out more about how the NDRS data can be used to support direct care.

Webinars

We often host webinars which are available to all. Information about future webinars will be published on the events page.

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Patients

Patient information

Collecting and keeping patient data safe

Opting out of disease registration

Using NDRS data for direct care

Your rights and accessing your data

Family history of cancer

Do I need to register?

Cancer quality of life survey

Patient information leaflets

Uses of patient data

Data stories

NDRS bitesize video series

Using NDRS data for direct care

Webinars