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