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FAQs

Whose responsibility is it to get the collection right and ensure the data is held securely?

  • For England it is Public Health England
  • For Wales it is Public Health Wales
  • For Scotland it is NHS Scotland’s Information Services Division
  • For Northern Ireland, the Cancer Registry is hosted by Queen’s University Belfast

Your questions

  • Data confidentiality and security
    • Could the computer that holds all this information be hacked or data about me be leaked in some way?
    • Do you hold my email address or mobile number?
    • Who will have access to my contact details?
    • Can you sell the data you hold about me or my cancer?
    • Whose responsibility is it to get the collection right and ensure the data is held securely?
  • Data sharing
    • How do you make sure the data you are releasing is going to be used appropriately?
    • Who has access to my data – in PHE and more widely?
    • Is there any patient led research from the data?
    • Does the cancer registry hold information about patients who are being treated privately?
  • Patient access
    • If I ask for the data the registry holds about me why must I collect it in person?
    • Can the data you hold help understand if I or my family have a genetic risk of cancer?
    • Does the cancer registry ever contact people directly?
  • What’s collected and why
    • Are all cancers covered and how do we measure the progress we are making?
    • How can you tell if the data you have about me is accurate?
    • Is my occupation recorded?
    • Does it include GP data?
    • What information is recorded?
    • Is data constantly added about me – when does it stop?

News and views

NDRS Webinar: Congenital Anomaly Registration – December 2020

Events

NDRS Webinar Series – Autumn 2020

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