NDRS Newsletter 18 October 2019
Welcome to the monthly NDRS newsletter
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.

The National Disease Registration Service is part of Public Health England and collects data from the NHS about cancer, rare diseases and congenital anomalies in England.
It is made up of the   National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Diseases Registration Service  (NCARDRS). The NDRS uses data to detect changes in the health of the population and help the NHS improve the diagnosis and treatment of these diseases.

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Data releases and publications
Latest cancer incidence and mortality data available
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.
Latest figures on emergency presentations of cancer available
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%.
Be Clear on Cancer Summaries
We continue to release summaries that measure the impact of Public Health England's Be Clear on Cancer  campaigns , which encourage people with possible cancer symptoms to seek medical help. This month we published summaries that evaluate inpatient admissions and cancer survival following the second national respiratory symptoms campaign . We also produced summaries that look at diagnostics in secondary care following the regional ovarian campaign and National Blood in Pee 1st, 2nd and 3rd campaigns .
New paper on conditional survival published in the British Journal of Cancer
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.
Lung cancer information released in latest Atlas of Variation
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.
Blood Cancer Dashboard
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.
Inequalities workbook
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.
New cancer data story for Gynaecological Cancer Awareness Month
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. 
Cancer Data Conference 2020
We are delighted to announce the next Cancer Data Conference (previously the Cancer Data, Outcomes and Services Conference) will be held on 1st-2nd July 2020 at Nottingham Trent University city centre campus . This conference will focus on variation and inequalities.

We will open for abstract submissions and registration on 2nd December. More information to follow next month.
Developments in genomic and molecular cancer data
On 2nd October we hosted a one-day event in collaboration with Cancer Research UK which focused on the developments in the collection and use of genomic and molecular data for cancer. Visit the events page for presentation slides from the event.
We are at the NCRI Cancer Conference!
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!
Other news
Systemic Anti-Cancer Therapy (SACT) dataset v3.0 has launched
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 .
First tumour agnostic treatment approved
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.
NCRI impact award
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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