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.
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.
For rare diseases, each registration record contains the following information:
name and date of birth
gender and ethnicity
address and NHS number
information about the diagnosis and treatment
Data is reviewed and linked by specially trained registration staff to create a patient record.
The patient data allows our analysts and others working in health to:
have oversight of how many people in England have cancer, a rare disease or a congenital anomaly
understand how well treatments are working - to help inform and improve patient care across the country
inform direct patient care
understand diseases and who is most at risk of developing them
improve diagnosis and screening programmes by exploring how and where people are diagnosed
improve treatments - by investigating how different treatments affect patient outcomes and how treatments vary between hospitals
evaluate policy - by comparing survival rates and outcomes with other countries and monitoring the impact of efforts to diagnose diseases earlier
improve genetic testing and counselling - data helps us to discover new gene mutations that cause cancer and rare diseases
For more information on how patient data is used for research and analysis see Our Work.
How long we keep patient data
We start collecting data as soon as a patient is investigated for cancer, a rare disease* or a congenital anomaly. We then follow their treatment for the rest of their life. We do this because we need to see if the disease comes back or if there are any side effects from the treatments they may receive.
It is important that we hold data for at least the lifetime of the patient so that we can look for any long-term trends of the condition and carry out research. For example, some forms of cancer can be inherited. For those families with this genetic risk, long term monitoring is important so they can be offered appropriate screening and treatment.
*We also collect data on individuals with a rare disease retrospectively. For more information on self-registration please email [email protected]
Data about an individual’s health is highly sensitive, and so we take great care over the way it is collected, stored and analysed.
We apply the strongest form of encryption to the patient data we hold. When we collect it, it is sent through a secure NHS-compliant online network. We store it on secure servers. Everyone working with patient data is trained in information governance and follows strict rules to make sure patient information stays safe.
Data security and data sharing
Most of the data that we share is anonymous (meaning the person cannot be identified), but sometimes we can share data that contains personal information.
Researchers (for example at a charity or university) can apply for permission to access patient data that is not anonymous (meaning it contains personal information).
Data is only shared if the researcher meets all the requirements for accessing patient identifiable data. For example, research ethics approval and data storage and security requirements.
Disease registration is crucial to improving patient outcomes. As well as using patient data for our own research and analysis, we often share information with other organisations. The data we share is usually anonymous and it can only be used for health care purposes; our absolute responsibility is to ensure patient confidentiality.
We share data to improve data accuracy and standards
We collaborate and advise through a number of partners, in the UK and internationally. Our partnerships help us to improve the accuracy of data on cancer, rare diseases and congenital anomaly. Read more about our partnerships.
We share data for research to improve treatments
Doctors and clinical teams can access anonymous patient data so they can see what treatments work well and compare their performance with other regions.
We also partner with charities, academics and the NHS to carry out research in cancer, rare diseases and congenital anomalies. This helps us learn more about these diseases and informs clinical practice and treatments.
How we share data
We make data available for health research purposes through a number of routes including our own research, National Statistics, academic papers, data tools and dashboards. Personally identifiable data is only released where the applicant can demonstrate it is to be used for a health research purpose and there is an appropriate legal basis with safeguards to protect the data once it has been shared.
Understanding COVID-19’s impact on cancer services
We are linking NDRS cancer data with other NHS data sets to help the NHS understand the impact of COVID-19 on the healthcare system. With this information, the NHS can plan cancer services that have been affected by COVID-19.
This can help the NHS answer questions such as:
how has cancer management changed in response to the pandemic?
what are the reasons for changes in the management of individual patients?
what effect do these changes have on patient outcomes?
what are the risks of COVID-19 infection and death for patients having cancer treatment during the pandemic?