It’s really important for people who have a brain tumour and the people that are caring for them to see how many other people there are like them and what’s happening to them during the course of their illness. We think it’s a real step forward and certainly gives people who use our services and support a sense that they are not alone.
How we collect and record patient data
Each year we register approximately 500,000 patients diagnosed with a cancer and we collect data on over 1,400 different rare diseases and congenital anomalies.
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.
How we use patient data
The data we collect and quality assure is used by our team of analysts and epidemiologists to produce a range of outputs that help improve patient outcomes, including:
- official statistics
- data tools and outputs
- data stories
- academic research (see library of journal publications for details)
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]
Find out how NDRS data can be used to support direct patient care.
How we keep patient data safe
The security of patient data is an absolute priority for NDRS. We have legal permission to collect patient data to protect the health of the population under Section 254 of the Health and Social Care Act 2012. Please visit the government legislation website to see the full Health and Social Care Act.
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.
Opting out of disease registration
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.
Last edited: 26 July 2023 11:44 am
