NDRS Newsletter 17January 2020
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 the first report from the Ovarian Cancer Audit Feasibility Pilot, the publication of the 23 year England cancer prevalence dashboard, and we announce new and upcoming vacancies.

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
Disease profile on ovarian cancer
On 9th January, we published a disease profile on ovarian cancer. This is the first report from the Ovarian Cancer Audit Feasibility Pilot and provides a detailed insight into incidence, stage, mortality and survival for ovary, fallopian tube and primary peritoneal carcinomas in England.

This work received coverage, primarily about geographical variation in stage and survival, in the press including the Telegraph, Independent, Huff Post, The Sun and The Daily Mail.
23 year cancer prevalence dashboard for England
This month, we published a dashboard and data workbook that provides prevalence counts for England between 1995 and 2017. The dashboard shows prevalence figures for England cancer alliances, STPs and CCGs broken down by sex, age, years since diagnosis, IMD, stage, ethnicity and for different tumour sites.

The data is referenced in a signposting document published by Macmillan, which provides a summary of the different measures of cancer prevalence and available outputs for each individual nation and the UK.
2019 radiotherapy data 
We have added data on radiotherapy activity in 2019 to our interactive tools on CancerData. The tool allows the user to see radiotherapy activity filtered by episodes and attendances by cancer alliance from 2009 to 2019. This data comes from the Radiotherapy Dataset (RTDS) held by NCRAS.

Counts of Intensity Modulated Radiotherapy (IMRT) by alliance and disease group is also available. IMRT is an advanced form of radiotherapy that can result in fewer side effects than conventional radiotherapy. IMRT is being utilised by an increasing number of providers for a larger number of disease groups following a National Health Service England (NHSE) Quality, Innovation, Productivity and Prevention (QIPP) measure (available on the NHS website). 
National Prostate Cancer Audit 2019 annual report
The National Prostate Cancer Audit (NPCA) published the  2019 annual report this month. The report looks at 42,668 men diagnosed with prostate cancer in England and Wales between 1st April 2017 and 31st March 2018.

The basis for the audit comprised routine data sources collated and held securely by us here at NCRAS, including the Cancer Data and Outcomes Dataset (COSD), Hospital Episode Statistics (HES), the Radiotherapy Dataset (RTDS), and the Systemic Anti-Cancer Therapy (SACT) dataset.

An infographic and executive summary were published alongside the main report.
National Lung Cancer Audit publications
We were involved in two publications released by the National Lung Cancer Audit (NLCA) this January.

The lung cancer clinical outcomes publication (LCCOP) includes data from 27 surgical units in England that performed thoracic surgery between 1 January and 31 December 2017. This report is based on data securely collated, maintained and checked by us here at NCRAS.

The spotlight audit on molecular testing in advanced lung cancer used a dedicated online portal created in collaboration with PHE to securely input data and is the first national study on molecular testing for patients in England with advanced Non-Small Cell Lung Cancer (NSCLC).
Blood cancer dashboard updated with CPES data
The Blood Cancer Dashboard has been updated to include Cancer Patient Experience Survey ( CPES) data, provided by NCRAS, to build a picture of the challenges of blood cancer. The dashboard uses cancer data from NCRAS and other sources to make comparisons between the four most common blood cancers and how they are treated between each cancer alliance.

The dashboard was the focus of an article by Health Service Journal ( HSJ) which focuses on how access to data can help to better understand blood cancer and identify areas for improvement.
Be Clear on Cancer metric summaries and final evaluation report
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. In December, we published several new and revised Be Clear on Cancer metric summaries for the local skin and prostate, regional and national oesophago-gastric and national breast and lung campaigns.

We also published the final evaluation report and executive headlines for the national breast cancer in women over 70 awareness campaigns, 2014 and 2015.
Upcoming data releases
Cancer registrations for 2018 - 27th January
This month we will publish our first release of the 2018 cancer registrations.

This release will be made available on gov.uk and will provide the cancer diagnoses and incidence rates for all types of cancer by age and sex.
Screening interventions dashboard update - 29th January
The Transforming Cancer Services Team (TCST) for London are soon to update their London screening interventions dashboards.

Information about the number and types of screening interventions implemented to improve screening coverage are mapped against current screening coverage data for London CCGs. It is hoped that by sharing this information, the delivery of interventions can be optimised across London, with resources targeted where they are most needed. These dashboards are generated by the TCST partnership with NCRAS, following a TCST-led survey of London stakeholders.
Cancer Data Conference 2020
Registration and abstract submission for the Cancer Data Conference 2020 are still open. 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.

There are also opportunities to get involved via sponsorship and the conference exhibition. If you are interested, please get in touch or go to the conference website.
Cancer Outcome and Services Dataset (COSD) Roadshows
This spring, NCRAS are hosting a number of Cancer Outcome and Services Dataset (COSD) Roadshows across England. These roadshows will help Trusts understand the changes to COSD, and Cancer Waiting Times (CWT).

Details of the roadshows are available on the following website, which includes links to supporting documents that you may find useful to download and absorb. Once the roadshows have finished, most of the presentations will also be made available for people to download and use for local education and training purposes.

There are still a few places available to attend the roadshows. Please get in touch with your organisations Cancer Manager if you are interested.
Other news
National roll out of molecular pathology training
Our cancer registration officers have a very busy month ahead, as we roll out national molecular pathology training across the team. We are aiming to maximise the use of our routine pathology feeds and our registration team are currently being trained to understand, interpret and record a range of biomarker results included on these reports, including mismatch repair status (a key 'pre-screen' test for Lynch Syndrome) and PD-L1 status (a key marker guiding immunotherapy treatment). This training has already been successfully piloted and rolled out in one of our regional offices and is being rolled out nationally over the next few weeks. This work will directly complement the data we receive from genomic laboratories.
The NDRS Genetic Request online portal celebrates its first birthday!
NDRS works very closely with clinical genetics services throughout the country by making accurate, high-quality information available to clinical geneticists and genetic counsellors in a timely manner, which helps patients and their families make informed choices about their health, especially when there is a strong suspicion that their cancer may be caused by an inherited genetic fault.

In January last year, a new online portal was launched for genetic requests, offering an automated and streamlined approach to processing family history confirmations from clinical genetics services. Over the last year, the new system has processed over 19,000 requests, with 99.99% of all requests being reported back to services within our 10 day target. More information on our genetic request service can be found on our website.
New vacancy - Scientific Program Manager in Cancer Genetics
We are looking for a Scientific Program Manager in Cancer Genetics (fixed term position) to coordinate linkage of NHS laboratory genomic data on cancer susceptibility gene variant status to PHE NDRS cancer datasets, and research analyses of the longitudinal datasets generated, as part of the 5-year Cancer Research UK funded CanGene-CanVar program. Please get in touch with Clare Turnbull if you would like to talk further about the role.
New vacancies coming soon
We will soon 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.
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