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Cancer registration
Why it matters and what
you need to know
What is cancer registration?
If you are diagnosed with cancer or a condition that may
lead to cancer, the NHS team looking after you will record
information about you and the care you receive. This
applies to children and adults of all ages.
This information is shared with the National Cancer
Registry, which is part of Public Health England.
The National Cancer Registry has the government's
permission to collect and use information about people
with cancer. This is because it is in the public interest to
use this information to improve the way cancer is
diagnosed and treated.
Why it matters
Cancer registration is the only way we can know how many
people are getting cancer and the types of cancer they
have.
This information helps us to:
look at overall trends in cancer
improve the diagnosis of cancer
develop new treatments and drugs
improve cancer services, and
inform national cancer policy.
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What information is collected?
The information we collect includes:
your name and date of birth
your sex and ethnic background
your address and NHS number
information about your diagnosis, and
information about your treatment and how well your
treatment is working.
It is really important that cancer is diagnosed as early as
possible. Cancer registration supports the work to improve
earlier diagnosis.
The diagram shows there has been an increase in the
percentage of cancer cases that are being diagnosed at an
early stage, when treatment is more likely to be successful.
Percentage of cancers
diagnosed at an early stage
47%
2013
2014
2015
2016
50%
53%
52%
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How will it benefit me?
We know that cancer registration is leading to
improvements in preventing, diagnosing and treating
cancer. This benefits everyone affected by cancer.
Healthcare staff may use information from the cancer
registry to see if you might benefit from being part of a
clinical trial.
Some cancers run in families. With your permission,
doctors can use your information to see if other members
of your family may be at risk, and find the best ways to
treat them.
Is my information secure?
Yes, all your information is kept confidential.
Cancer registration helps drive research into cancer so we
may sometimes need to share your information with
researchers outside Public Health England. There are very
strict rules for this. It only happens if the researchers have
a lawful reason to use the information. Researchers must
prove that the information will be kept safe and secure to
protect your privacy.
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Can I see the information you holdĀ about me?
Yes, we can give it to a doctor (GP) who knows who you
are, so they can share all the information with you.
Can I ask for my informationĀ not to be
included in the cancer registry?
Yes, you have the right to opt out of cancer registration.
This will not affect the personal care you receive from your
healthcare team.
If you do not want your information included in the
national cancer registry, you can contact us at
optout@phe.gov.uk or write to:
Director
National Cancer Registry
Public Health England
6th Floor, Wellington House
133-155 Waterloo Road
London SE1 BUG.
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For information on your rights and privacy visit
www.ndrs.nhs.uk/cancer-registration-your-rights-and-privacy
This leaflet is available in alternative formats. Contact us at
NDRSengagement@phe.gov.uk for more information.
This leaflet is reviewed regularly. If you have any comments,
please email NDRSengagement@phe.gov.uk
PHE publications gateway number:
2018747. Version 6, January 2019.
Where can I find out more?
If you would like to find out why cancer registration is
important or have any questions about the work we do,
you can:
visit us online at www.ndrs.nhs.uk
talk to a member of the NHS cancer team treating you,
or
visit www.nhs.uk/your-nhs-data-matters to find out how
the NHS uses information.
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