Welcome to the monthly NDRS newsletter
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Each month we share the latest news from the
National Disease Registration Service (NDRS)
including new data releases, publications and events.
In this month's update, we announce the date and location of the 2020 Cancer Data Conference, share news of the most recent cancer incidence and mortality statistics, and the launch of the new Systemic Anti-Cancer Therapy (SACT) dataset v3.0.
You have received this email because you previously subscribed to receive updates from either NCRAS or NCARDRS. We will now be sharing news from both organisations as part of the NDRS in this newsletter. If you no longer want to hear from us please unsubscribe by following the link at the bottom of this email.
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In future editions, we would like to include
patient and public perspectives, please get in touch if you are interested in contributing.
And we would welcome your feedback on our newsletter too.
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Data releases and publications
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Latest cancer incidence and mortality data available
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We added the most recent cancer
incidence and
mortality data to our statistics website,
CancerData. The data is available by age, sex and type of cancer for cancers diagnosed in England from 2001-2017, as well as CCG level data for more common cancers.
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Latest figures on emergency presentations of cancer available
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We have published the
latest figures
on the emergency presentations of cancer between January and March 2019. These figures estimate the proportion of all patients diagnosed with malignant cancer (excluding melanoma skin cancer) where the patient first presented as an emergency. The number of cancers diagnosed as an emergency presentation has declined, with the one year average now at 18.3%.
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Be Clear on Cancer Summaries
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New paper on conditional survival published in the British Journal of Cancer
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This month we published
a paper about conditional survival for people diagnosed with cancer in England. The publication shows the long term probability of survival for cancer patients who have already survived for 1 to 5 years since being diagnosed. This paper provides a more realistic estimate for survival for patients than other figures that are used more widely.
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Lung cancer information released in latest Atlas of Variation
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We contributed to the
latest edition
of PHE’s Atlas of Variation. This is an
interactive tool
that measures the variation in risk factors and healthcare for respiratory disease in England in 2019 and includes a section on lung cancer. The information is presented geographically and looks at incidence, mortality, survival, stage, and routes to diagnosis. It is published in partnership with
NHS England,
RightCare, and other organisations.
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NCRAS data was used to produce a
Blood Cancer Dashboard. It was produced as part of the
Make Blood Cancer Visible campaign and was a joint project between
Janssen and the
Blood Cancer Alliance. It uses blood cancer data from NCRAS and other sources to make comparisons between the four most common blood cancers and how they are treated between different Cancer Alliances. This is a great example of how NCRAS data is being used to help improve cancer services.
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We published a new
inequalities workbook as part of our partnership with the Transforming Cancer Services Team for London (TCST). The data looks at variations in routes to diagnosis, stage at diagnosis and waiting times from referral to treatment for those on the 62 day Cancer Waiting Times Pathway.
This work will support the publication of an Inequalities Toolkit for London which will be used to help local areas identify variations in cancer care and develop programmes to address this.
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New cancer data story for Gynaecological Cancer Awareness Month
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In September we published a
new cancer data story
and
blog
to mark Gynaecological Cancer Awareness Month. The story talks about how one charity,
Target Ovarian Cancer,
used NCRAS data to raise awareness that ovarian cancer is often diagnosed too late.
This is the latest in a series of cancer data stories that explain how patient data is used to improve cancer care. Look out for this month's stories to mark Breast Cancer Awareness Month.
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Cancer Data Conference 2020
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We will open for abstract submissions and registration on 2nd December. More information to follow next month.
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Developments in genomic and molecular cancer data
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We are at the NCRI Cancer Conference!
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The National Cancer Research Institute (NCRI) Cancer
Conference is taking place on 3rd-5th November. NCRAS will be giving several poster presentations. Topics include using routinely collected population healthcare data to inform commissioning decisions through the Cancer Drugs Fund (CDF), cancer survival by stage at diagnosis in England, and integrating germline and somatic genetic test result data into NCRAS.
See you there if you are attending!
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Systemic Anti-Cancer Therapy (SACT) dataset v3.0 has launched
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The SACT dataset collects information on the use of systemic anti-cancer therapy activity from all NHS England treatment providers. It is the world’s first comprehensive cancer treatment database, allowing us to understand treatment patterns and outcomes on a national scale. We recently completed a full dataset review to ensure the dataset remains clinically relevant, records the most important information to help improve patient care and submission does not create an excessive burden on NHS trusts. The revised dataset (SACTv3.0) launched in September with trusts starting to record the new information from this date.
If you have any queries or would like more information about the SACT dataset v3.0, please contact the
SACT helpdesk
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First tumour agnostic treatment approved
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The first
tumour agnostic treatment has been approved for use in Europe. This treatment treats a tumour based on its genetic profile rather than its location.
The drug is
larotrectinib
and it is used to treat all solid tumours with
NTRK gene fusions
. Once data collection has been scoped we would expect the drug to enter the Cancer Drugs Fund (
CDF) and become part of NCRAS molecular/SACT datasets.
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Congratulations to Dr Jem Rashbass, Director for the National Disease Registration, and Professor Paul Pharoah, Department of Cancer Epidemiology, University of Cambridge, who received the
NCRI Impact Award for their outstanding contribution to the progress of cancer research.
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Thank you for reading. If you have any questions or queries please get in touch. We would welcome your feedback on this newsletter too, and if you wish to unsubcribe please follow the link below.
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