Why is my data needed, don’t you know about me already?
Data about people with rare diseases is extremely useful for improving diagnosis and treatment of rare diseases and congenital anomalies. In an NCARDRS stakeholder survey, 96% of respondents requested that we develop a system for a way for people to self-report to the national register.
Your data may already exist on hospital systems but finding out about you and your rare disease can be difficult. This is particularly important in cases where people with rare disease are unlikely to be reported to NCARDRS through other methods. This might include patients who:
- have conditions that do not require frequent hospital contact
- who are not seen in specialist centres
- who are no longer engaged with health services
- who were diagnosed with a condition a long time ago
- have conditions that are not captured in an identifiable way in healthcare data
By self-registering, you can help us achieve national registration for your condition. This is because you can be counted but also your data can help us develop methods to identify people with the same condition as you in the routinely collected healthcare data.
How is my data used?
The data we collect on rare diseases and congenital anomalies comes from multiple sources. We analyse the data and create output on the data we hold, but it is also used by researchers and trusted organisations to increase the understanding of these conditions and improve outcomes for those that have them. Our data also helps to show how many people in England have a rare disease or a congenital anomaly and how well treatments are working, which means it can be used to improve patient care across the country.
How is my data kept safe?
Information that identifies you is only used if it is:
- used to improve health and care
- looked after properly and kept safe
- allowed by law
- absolutely necessary - where anonymised data would not do the same job
There are strict rules about who can access confidential patient information, how it must be protected, and what it can be used for. Before identifiable information is shared with other organisations, they must satisfy our Data Access Request Service that they will store it safely and legally, and they have a good reason for using it that will benefit health and care. The Personal Demographic Service (PDS) may be used to verify your identity, this data is held in a highly secured environment.
Information is never passed to marketing or insurance companies without consent. We publish all our data releases on the NHS Digital Data Release Register.
We apply the strongest form of encryption to the data we hold. Data about an individual’s health is highly sensitive, and so great care is taken over the way it is collected, maintained and analysed. NHS Digital’s Data Protection Impact Assessment (DPIA) is used to monitor the data we use. There is also an obligation to the National Data Guardian to ensure all sensitive data is strongly encrypted and stored on NHS compliant secure servers. The data is only accessible by staff who operate under the strictest of controls. Security procedures are regularly reviewed to make sure that all systems use the most up-to-date and effective ways to protect data.
We are aware that some people do not want their information held by NCARDRS. Everyone has the right to opt-out of rare disease and congenital anomaly registration. You can find out more on the patient opt out page.