Is data constantly added about me – when does it stop?

The National Disease Registration Service does not have access to your detailed hospital records.  But, to understand why some people get cancer and how they respond to treatment, or to see whether there are any complications, they do link your cancer data to other sources of information about you collected elsewhere in the NHS.  This includes your cancer treatments and the tests you might have had. It’s important that all data is collected not just throughout your care but for the rest of your life. Only this way will we know the outcome of the treatment you received, or long term complications and whether there has been any recurrence of the disease.