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.

Select from the boxes below to find out more:

Collecting and keeping patient data safe

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

Opting out of disease registration

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

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.

Using NDRS data for direct care

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

Do I need to register?

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

Find out more

Example of genetic counsellor talking to a patient

Genetic enquiries

We support NHS clinical genetics services by offering a service to check cancer diagnoses within families

Quality of Life survey

The cancer Quality of Life (QoL) survey looks at how quality of life may have changed for people following a cancer diagnosis.

Image of doctor showing patient an information leaflet

Patient information leaflets

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

Screenshot of NDRS Cambridge team working in the office.

The National Disease Registration Service

The National Disease Registration Service (NDRS) collects, curates, quality assures and analyses data on people in England.

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.