Privacy notice The NHS Proton Registry
Who we are
Open question
How should the controller and operator roles be described? This depends on the controller decision noted on the About page. The Christie operates the Registry in every option under consideration.
What we collect and why
Open question
How should the categories of data be summarised (identifiers, demographics, diagnosis, treatment and outcomes) together with the Registry's purposes? This should match the About page and the data catalogue.
Our legal basis
Open question
What is the agreed wording for the Registry's lawful basis under UK GDPR (Article 6 and Article 9 conditions) and its position under the common law duty of confidentiality, including the current status of the s.251 application?
Who we share with
Open question
How should sharing be described? This covers approved projects (anonymised results by default, pseudonymised records by exception), linkage with other national registries, contact with patients through their treating hospital, and confirmation that data is not sold.
How long we keep it
Open question
What is the retention statement? The current drafts say records are kept for the life of the Registry, because the effects of treatment are lifelong, with arrangements for anonymisation or destruction if the Registry closes.
Your rights and choices
Open question
How should rights be set out? This covers rights under UK GDPR, how the national data opt-out and Registry-level objections are applied, and how to complain, including to the Information Commissioner's Office.
This website
This website does not collect or process any personal data. It sets no cookies and uses no analytics. If you email the Registry, your message is handled within NHS email systems and used only to deal with your enquiry.
Open question
How long are emails to the Registry's mailbox kept, and who can read them?