Opt-out of disease registration

You can opt-out if you do not want your data to be held on the cancer, rare disease or congenital anomaly register. You can request your child’s data to be removed if either:

  • they are aged 13 or younger
  • they are over 13 and they have competency issues

Opting out of the registers is different from the national NHS opt-out. If you do not want us to hold any of your data, you must still opt-out with us directly even if you have completed the national NHS opt-out.

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:

NDRS Data Opt-Out
2nd floor
23 Stephenson Street
Birmingham
B2 4BH

A postal application may take longer 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 or all of them if applicable. You do not need to fill in a new form for each registry.

Proof of identity

For data protection reasons we need proof of your identity and current address.

Once we have received your completed application form a member of your team will be in touch to ask that you provide copies of the following documents:

  • photo identification (a copy of your passport or driving licence)
  • proof of address (a copy of a recent utility bill or bank statement)

We will destroy these documents securely once your request is complete.

You can also post in copies of your opt-out request and identification papers if you prefer, but it may take longer for us to process. Please contact the opt-out team on NDRSoptout@nhs.net for more information.

What happens next

Once we’ve received your request and confirmed your identity, we will offer you the chance to speak to our Caldicott Guardian, who can answer any queries about what happens to your data.

A Caldicott Guardian is a senior person responsible for protecting the confidentiality of people’s health and care information and making sure it is used properly. This call is optional – it does not affect your right to opt-out.

If you’ve already opted out of the national NHS opt-out

You will still need to opt-out directly with us if you do not want us to hold any information about you or your child.

We are not included in the NHS national data opt-out scheme because the data we collect and share is permitted under legal instructions known as Directions, from the Secretary of State for Health and Social Care, under section 254 of the Health and Social Care Act 2012 (2012 Act). The Directions are called the National Disease Registries Directions 2021. They instruct NHS Digital to collect and use confidential patient information to operate the NDRS.

This means that even if you have already opted out of the national NHS opt-out, we will still hold your data, but we will not share your data with other organisations for research and planning.

How we remove your data

We will delete any information we have about you or your child within 20 days of receiving your request. We will also destroy the copies of your identification.

We will add your NHS number to an exclusion list within our computer programme. This will stop any new data about you or your child from being registered.

If we have already 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.

For audit purposes, we will keep a confidential copy of your opt-out request for 3 years. This includes your form, emails or letters but not your proof of ID.

We will not tell your healthcare providers of your decision to opt-out.

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

The risks and implications of opting out

For you

If you opt-out, we will not be able to track your diagnosis, or let you know about screening or treatment you should receive.

For example, we provide data to NHS England 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

If you opt-out, it will not be possible to share information that could help your relatives assess their genetic risk of developing cancer.

For the wider population and health system

The more data we have, the more reliable the information we can share is. If we have less data, it makes it:

  • more difficult for healthcare providers to allocate resources locally
  • less useful for researchers who use it to improve diagnosis and treatment

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. 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: May 2022