Opt out of disease registration

You do not need to register for your data to be shared with and used by the National Disease Registration Service (NDRS). But if you do not want your information to be used, you can opt-out.  

You can also opt-out for your child if:

  • they are under the age of 13

OR

  • you can show that they have competency issues

At the current time in light of COVID-19, we recommend that applications are made online. If you would prefer to make an opt-out by post, please download this form and send it to: 

Director
NDRS Data Opt-Out
2nd floor
The Government Hub
23 St Stephenson Street
Birmingham B2 4BH

Due to the current restrictions, a postal application may take longer than usual to process.

How to opt-out 

To opt-out of the cancer, rare disease or congenital anomaly register, you need to send a form and two copies of ID in an email to NDRSoptout@nhs.net. 

Opt-out form

The form can be downloaded here. Please state on the form whether you would like to opt-out of the cancer, the rare disease, or the congenital anomaly register. You do not need to fill in a new form for each registry. 

Identification

For data protection purposes, we need two forms of identification. One is to prove your identity and the other to confirm your address. We need these documents to make sure that we remove the right person’s information. These documents will only be used to carry out your opt-out request and are securely destroyed once completed.  

You need: 

  • a valid UK passport or drivers’ licence 

AND 

  • a utility bill or bank statement

The opt-out process

Step 1 

Complete the form and send it in an email to NDRSoptout@nhs.net with your two copies of identification. 

Once we have received your completed form and identification documents, you will be offered the option of speaking to our Caldicott Guardian. He can answer any questions you have about opting out and disease registration. 

This call is optional and does not affect the process of opting out.   

Step 2 

These are the actions we will take to complete your opt-out.

We will delete any information we have about you or your child. 

We will also add an encoded version of your NHS number to an exclusion list within our computer programme. This searches all incoming data and will stop any new data about you or your child from being registered.  

If we have previously shared personal information about you or your child with other organisations that are allowed to have your information such as NHS England, we will request that they also delete your information from their records.  

Step 3 

We will write to you once the process is complete to confirm all the actions we have taken. 

We will complete the process within 20 days of receiving your opt-out form and identification documents. 

For audit purposes, we will keep a confidential copy of your opt-out request for three years. This includes your form, emails or letters but not your proof of identity documents. 

If you change your mind about opting out from disease registration, please send an email to NDRSoptout@nhs.net.

What happens to my information if I opt out? 

If you choose to opt-out from disease registration, NDRS will delete any information it holds about you or your child.  Any further information NDRS receive about you or your child in the future from your healthcare providers will also be deleted.  NDRS does not tell your healthcare providers of your decision to opt-out.

Can I see what data you hold on me?

Any patient can request access to a copy of their own data, or their child’s data, held by NDRS. These requests are called Subject Access Requests.  

Find out more about Subject Access Requests here. If you want to make a complaint about how your data is being used you can contact The Information Commissioner’s Office. They are the UK’s independent authority who oversees the public’s interest in matters of data and privacy. You can contact the ICO here or by calling 0303 123 1113. 

What are the potential implications of opting-out? 

For you

If you choose to opt out of cancer registration, it may not be possible to identify you as being at risk in future patient notification exercises.

For example, NHS England uses information from NCRAS to identify women at risk of breast cancer due to having radiotherapy for Hodgkin Lymphoma when they were younger. The NHS uses this information to make sure that women at risk receive appointments for screening. This helps early diagnosis and can improve quality of life. 

For your relatives

Your information and the information from other people with cancer will help improve how our health services provide care to people with cancer, a rare disease or congenital anomaly and their families in the future. For example, with your permission, cancer information could be shared that could be essential to your relatives to assess their genetic risk of developing cancer.

For the wider population and health system

If more people choose to opt-out then information held by NDRS will become less complete and less reliable. This will make it less useful to healthcare providers who use the information to allocate resources locally, and less useful for researchers who use it to improve the diagnosis of cancer, rare diseases and congenital anomalies, look for new treatments and drugs and look at overall trends in these conditions.  

Find out more about how data is used here.

The national data opt-out 

The NHS changed the way patient data is handled and processed in 2018. The national data opt-out programme was designed to give patients more say about who has access to their medical records. While information about your health and the care you receive still needs to be collected and stored to provide you with personal care, you will be able to opt-out of your personally identifiable information being shared for some purposes across the health and social care system.  

The national data opt-out does not apply to the data we collect on cancer, rare diseases or congenital anomalies. This information is deemed to be of such national importance that it is exempt from this legislation. If you do not want your information collected and shared with NDRS you must opt-out with us directly.

However, while the national data opt-out scheme does not affect the information we collect, it does mean we will apply your preferences on what we do with that data. This means that while it will still be collected from the health and care system, if you choose to opt-out through the national data opt-out programme, we will ensure that your information is not shared with external organisations who use it for research and to plan health and care services.

Find out more about the national data opt and out how it affects cancer data here.

 

Webpage last updated: October 2021