Do I need to register?

Cancer patients do not need to register their data with us.

We are granted special permission to do this automatically, as part of NHS England, we have a special legal instruction to collect patient data without needing informed consent. This instruction is granted under section 254 of the Health and Social Care Act 2012. 

We collect data from a variety of sources depending on the patient's diagnosis. For cancer, we receive data on a monthly basis directly from NHS hospitals. When a patient is diagnosed, the hospital will send information about the type of tumour and when it was diagnosed.

If the patient then starts receiving treatment such as radiotherapy, the radiotherapy department will then send us information about their treatment and how effective it has been.

Find out more about our cancer registration service.

Congenital anomaly cases do not need to be registered with us directly. 

For congenital anomaly cases, we receive both antenatal and neonatal data from the hospital in various forms such as scan reports, screening results and neonatal notes. We hold information on both the mother and the baby.

We are granted special permission to collect this data automatically as part of NHS England, we have a special legal instruction to collect patient data without needing informed consent. This instruction is granted under section 254 of the Health and Social Care Act 2012. 

Find out more about our congenital anomaly registration service.

Rare diseases are not automatically registered with us. After the initial pilot period, we are now reviewing the best approach to support self-registration of rare diseases, and NHS England will share more information on this in due course.

We collect data from a variety of sources depending on the patient's diagnosis. A disease is considered rare when it affects no more than one person in 2,000. 

Find out more about our rare disease registration service.

Patients with a cancer, congenital anomaly or rare disease can opt out of disease registration if they do not want us to hold or use their data.

Find out how patient's can request to opt out of the disease registration process. 

You can ask to see your data by making what is known as a Subject Access Request.

Find out about your rights and privacy, how you can see your data.