Opting out of disease registration

The National Disease Registration Service has special permission to collect cancer, congenital anomaly and in some instances, rare disease data, direct from the NHS. This means if you are diagnosed with cancer or a condition that could lead to cancer, or your child is diagnosed with a congenital anomaly or rare disease, you do not need to register your information with us.

For adults with a rare disease, you may wish to register with us retrospectively. You can find out more about how to do this by emailing [email protected].

In all instances you have the right to opt-out of cancer, congenital anomaly and rare disease registration and ask us to remove your information from our registration service. 

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

• you can show that they have competency issues

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

As part of the opt out process you will be asked to 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.

Please contact the opt out team at [email protected]  to discuss your request and commence the process. 

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.

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 de-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 [email protected].

For you

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

The examples below demonstrate how NDRS data is used for the benefit of patients and their direct care. 

We provide data to NHS England to identify women at risk of breast cancer due to having radiotherapy for lymphoma when they were younger. The NHS uses this information to identify women at increased risk of breast cancer who are eligible to start enhanced breast screening. The sooner cancer is detected, the more treatment options are available to patients and the higher the chances of recovery. This helps early diagnosis and can improve quality of life.

We also provide data to NHS England to identify people with Lynch syndrome (LS), an inherited predisposition to colorectal and endometrial cancers, as well as other tumours including upper gastrointestinal cancer. It’s thought that around 1 in 280 people has LS, but only 5 - 10% of them are diagnosed. Identifying more people with LS means they can be offered cancer screening and monitoring.

Visit the direct care page to find out more about the use of data for direct care.

You can find out more about how patient data is used for the benefit of patients in our data stories page. 

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

Opting out of the registers is different from the National data opt out . If you do not want us to hold any of your data, you must still opt out with us directly.

If you’ve already opted out of the national data 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 data opt out scheme because the data we collect and share is considered so important to public health. 

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