Rare diseases patient self registration

Thank you for your interest in the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS). This page explains what registration means for you and your care, please read the following information carefully.

NCARDRS’ aim is to register all patients in England who have a rare disease. We collect patient information from many different sources, including hospital clinics, laboratories and specialist centres. National rare disease registration data allows us to:

• support and empower patients and their carers by providing a national register of their disease or disorder
• provide a resource for clinicians to support high quality clinical practice
• provide epidemiology and monitoring of the frequency, nature, cause and outcomes of these disorders
• inform the planning and commissioning of rare disease public health, and health and social care provision
• support research, including clinical trials, through access to existing data and collaboration on new data streams
• provide a resource to monitor, evaluate and audit health and social care services, including the efficacy and outcomes of screening programmes.

If you self-register, we ask for your name, postcode and date of birth so that we can link your information to data we might already hold about you. We also ask about who you see for treatment or care of your condition to help us to confirm your rare disease diagnosis. Registering will not affect your access to healthcare.

To register your details, or to register on behalf of someone else, we need to check that it is appropriate for NCARDRS to hold your data.

You can self-register with NCARDRS if you/your child has a rare disease or rare congenital anomaly.

A disease is considered rare when it affects no more than one person in 2,000. The easiest way to check this is by visiting the Orphanet website to see if your condition is listed. If you are unsure if you have a rare disease, please email us on [email protected] to check.

You or your child must be treated or be a resident in England. If we already hold data on you, the information you provide at self-registration will be linked to your existing record.

To register your own details, you must:

• be aged 13 or older
• have a rare disease or rare congenital anomaly - see notes below
• be resident in England and/or treated in England

To register on behalf of someone else:

• the child should be aged under 13 years old - see notes below
• the person must have a rare disease or rare congenital anomaly - see notes below
• if you would like to register an adult who is unable to do so themselves, you will need to submit a power of attorney to prove that you can act on their behalf - please email us at [email protected] to organise
• the person you are registering must be resident in England and/or treated in England.

Notes:

• a disease is considered rare when it affects no more than one person in 2,000
• the easiest way to check this is by visiting the Orphanet website to see if your condition is listed
• if you are at all uncertain, please email us on [email protected] to check
• we encourage people aged 13 and above to register themselves if they are able, but parents or legal guardians can register children aged 13-16 if appropriate

*Please note we are unable to register cancer patients. This self-registration service is only for rare diseases. You can find out more about on our 'do I need to register' page. 

Please email the rare diseases team at [email protected] to discuss completing a self registration. 

If you do not live in England or if you are not treated in England, unfortunately we are unable to register your details, however the information below might be helpful:

• Wales - information about the Congenital Anomaly Register and Information Service for Wales (CARIS) can be found on the CARIS website or by e-mailing [email protected]
• Scotland - information for residents in Scotland can be found on the Public Health Scotland website or by emailing [email protected]
• Northern Ireland - information for Northern Ireland residents can be found on the Northern Ireland Rare Disease Partnership website or by emailing [email protected]
• outside of the United Kingdom - information for any country outside of the UK should be directed to your doctor or local health service

If you want to see what information we hold about you or your child, you can make a Subject Access Request (SAR).

Find out more out more about Subject Access Requests on the NHS Digital website. 

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.