NDRS Newsletter 20 December 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 share news about the Cancer Data Conference 2020, the latest data release from the Get Data Out programme, and we announce upcoming data releases in the new year.

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
Head and neck cancer data published
On Wednesday, we published detailed statistics about head and neck cancers, as part of our  Get Data Out programme. You can find data on incidence rates, treatments, and routes to diagnosis for head and neck cancer patients from 2013.

Data on survival statistics for patients diagnosed in 2017 was also updated for the other cancer types in the programme - brain , ovarian , testicular , pancreatic , and prostate tumours. And data about routes to diagnosis for prostate cancer was also added.
Cancer survival index for CCGs in England
This month we published data on one-year survival for each CCG. This was published on gov.uk for the first time. This is accompanied by an interactive app. The one-year index of cancer survival for England has increased from 62.6% in 2002 to 73.3% in 2017.
Update of the Cancer Services Profile
We published the 2019 update of the Cancer Services Profile on the Fingertips tool. The indicators look at demographics, cancer screening, incidence, Two-Week Wait referrals, diagnostic services, emergency presentations and admissions by GP practice, CCG and at a national level.
New paper about the National Cancer Diagnosis Audit published in Cancer Epidemiology
We published a paper about avoidable delays to patient cancer diagnoses. The paper used National Cancer Diagnosis Audit data and showed that 24% of patients were reported by GPs to have had an avoidable delay to their diagnosis. This occurred most commonly when patients had GP-led investigations before referral.

This information was picked up by the tabloids and trade press.
Two new cancer data stories released about lung and brain cancer
This month we released two new cancer data stories and an accompanying blog. The first story talks about how patient data was used to compare SABR and fractionated radiotherapy for treating non-small cell lung cancer (NSCLC). The second story describes how one charity, brainstrust, used patient data to change perceptions about non-malignant brain tumours.

These are the latest in a series of cancer data stories that explain how patient data is used to improve cancer care. 
NCRAS data was used by Macmillan to estimate how many people are living with treatable but not curable cancers
Macmillan published a report that looks at the population of people living with treatable but not curable cancers. The findings were based on our partnership work and estimate that around 136,000 people can be described as living with treatable but not curable cancers.

The charity also used our data to publish new estimates of the projected prevalence of cancer in the UK. They predict that around 3 million people now live with cancer (in 2020) which will rise to 3.5 million by 2025. These findings have gained media coverage which focus on individual nation figures and provide a reminder of cancer signs and symptoms.
Analyses of NCRAS liver cancer data included in news stories
Last month, analyses of NCRAS liver cancer data was included in news stories that linked liver cancer to unhealthy lifestyles. The data found that deaths from liver cancer have tripled in England in the last 20 years.
Cancer statistics: availability and location
NCRAS regularly publishes statistics about cancer in England for anyone to use. For the latest data on cancer, please read our guide.
Upcoming data releases
Ovarian Cancer Audit Feasibility Pilot report - January
The Ovarian Cancer Audit Feasibility Pilot is a collaboration between the gynaecological oncology clinical community, the charity sector, and the National Cancer Registration and Analysis Service, part of Public Health England, to perform meaningful analysis of routinely collected data for the purposes of improving treatment and outcomes for women diagnosed with ovarian cancer in England.

The first report of a series of analyses throughout the 2 year project will be released in January 2020. It will provide a detailed insight into the current status of this disease in England, including details of disease incidence, mortality and survival. For further information about the Ovarian Cancer Audit Feasibility Pilot and links to all outputs from the project (once released), please visit the NCRAS website.
23 year cancer prevalence dashboard website - 8th January
In January we will be publishing a dashboard on CancerData to provide 23 year cancer prevalence figures for England between 1995 and 2017. This is the first time that prevalence data will be made available via the CancerData website. The dashboard presents prevalence counts and rates for Clinical Commissioning Groups, Sustainability and Transformation Partnerships and Cancer Alliances across England, broken down by population demographics, stage at diagnosis and for different tumour types. This dashboard was generated by the NCRAS partnership with the Transforming Cancer Services Team for London, and is based on the 2017 London Prevalence Dashboard.
Cancer registration for 2018 - 27th January
Next month we will publish our first release of the 2018 cancer registrations. These statistics will look at cancer diagnoses in 2018 and age-standardised incidence rates for all types of cancer by age, sex, and region including breast, prostate, lung and colorectal cancer.
Cancer Data Conference 2020
We are excited to announce that the website for the Cancer Data Conference 2020 is now live and can be accessed here.

Registration and abstract submission are now open, and abstracts can be submitted via the website until 16th February 2020. We are also offering bursaries for patients, carers and members of the public to attend the conference. Information about the bursaries can be found here.

Finally, there are opportunities to get involved via sponsorship and the conference exhibition. If you are interested, please get in touch or go to the conference website.
Other news
New design for the CancerData website
Our newly designed CancerData.nhs.uk website went live this month. There is now a dedicated home page with drop down menus, quick links to all the pages, and visuals to match our NDRS website . Also, please note the 'Get Data Out' page has been renamed as 'Detailed Statistics'.

We would appreciate any feedback, so please do not hesitate to get in touch .
New vacancies coming soon
In the new year we will be looking to recruit four new clinical leads to support our data and analytical work across NDRS. These will be part-time secondments.

Each will be recognised experts in their field and we are particularly seeking experts in radiotherapy, chemotherapy, haematology and congenital anomalies and rare diseases.

More detail about these posts including how to apply will be included in the next edition of this newsletter.
University of Cambridge Vice Chancellors Award for Predict Prostate Tool
In November, the Predict Prostate Tool , which is based on NCRAS data, was awarded a University of Cambridge Vice Chancellors Award for research impact and public engagement. The tool is designed to help men with prostate cancer choose between active surveillance and treatment such as surgery. 
Merry Christmas!
We wish everyone a Merry Christmas and a Happy New Year!
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