NDRS Newsletter 20 March 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 an update on the impact of COVID-19, the NCRAS publication library, and we announce new 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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Impact of COVID-19
PHE NDRS staff have been supporting the response to coronavirus COVID-19 in a number of ways including undertaking high quality rapid analysis and reporting, using our routinely collected data to help identify high risk groups, redeploying some staff to support PHE in its role, and providing digital, technical, and data expertise as needed, as well as supporting teams in NHS England and NHS Improvement, NHSX, and NHS Digital. We continue our work on NCRAS and NCARDRS activities and will keep you informed via the NDRS newsletter of any changes. For information about the Government response to COVID-19 please see the gov.uk pages here.
Cancer Data Conference 2020 cancelled
We regret to inform you that the Cancer Data Conference 2020 has been cancelled and all other events are currently on hold until further notice. We would like to thank everyone involved for their interest and engagement with the conference so far, especially to those who have supported its development, submitted abstracts, and agreed to speak or present.

If you registered to attend the conference you will receive a refund in the coming days for any conference fees you had paid. Please note, PHE are unfortunately unable to reimburse any travel or accommodation costs. We will be exploring the possibility of rescheduling the 2020 conference at a later date and will keep you updated on this decision, but if you have any questions please contact us at NDRengagement@phe.gov.uk.
Data releases and publications
Publication library
Last month, we released our publication library. This resource lists the many publications produced by us here at the National Cancer Registration and Analysis (NCRAS), and demonstrates how we use patient data.

The publication library currently includes work from January 2019-December 2019 and will be updated every three months. We will be working to extend this to include all NDRS publications in the next few months.
Two blogs released for Rare Disease Day
On 28th February, we were involved in two blogs to mark Rare Disease Day.

The first blog focuses on a collaborative project between the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS), the University of Nottingham, and Nottingham University Hospitals. The project finds ways to register people with rare autoimmune rheumatic diseases, improve patient care, and increase our understanding of these diseases.

The second blog explains how patient data is being used to find out how many people in England have Wilson's disease to improve patient care.
End of Life Treatment Data dashboard for London
This month, the Transforming Cancer Services Team (TCST) published a dashboard describing care at the end of life for London cancer patients. For people resident in London at diagnosis who died between 2014 and 2017 with cancer as the underlying cause of death, the dashboard describes:

  • Location of death
  • Occurrence of ≥3 emergency admissions in the last 90 days of life
  • Length of stay in hospital in the last 90 days of life
  • Receipt of radiotherapy, chemotherapy, or surgery in the last 90 days of life

The data is broken down by age at death, sex, income deprivation, ethnicity, tumour site, stage, and area of residence at diagnosis.

A workbook is also available.
Be Clear on Cancer methodology document
We have published an updated version of the Be Clear on Cancer methodology document.

This resource provides details about the methodology used for the analysis of the Be Clear on Cancer evaluation metrics.
Paper published on the Life After Prostate Cancer Diagnosis (LAPCD) project
Cancer registration data was the basis for a paper titled "Decision regret in men living with and beyond non-metastatic prostate cancer in the United Kingdom: A population-based patient-reported outcome study". The study found that men who were not involved in their clinical decision making were more likely to regret their treatment choice.
Upcoming data releases
New detailed statistics for stomach, oesophageal, bladder and kidney cancers, and sarcomas - 23rd March
On 23rd March, detailed statistics on stomach, oesophageal, kidney and bladder cancers, and sarcomas will be released as part of the Get Data Out programme from NCRAS. Statistics about incidence, routes to diagnosis, and treatment will be available.
Survival: geographical patterns bulletin - 25th March
The geographical patterns of cancer survival in England for patients diagnosed 2013-2017 and followed up to 2018 will be published on 25th March.

The National Statistics publication includes a breakdown of cancer survival by NHS Region, Cancer Alliances, and Sustainability and Transformation Partnerships. It includes 1 and 5 year cancer survival estimates using the same data and methodology as the Cancer Survival in England bulletin published in August 2019.
Be Clear on Cancer 2014 and 2015 oesophago-gastric campaigns evaluation report - 26th March
NCRAS will publish the final evaluation report for the Be Clear on Cancer: regional and national oesophageal and gastric cancer awareness campaigns 2014 and 2015 on 26th March.

The campaigns aimed to raise awareness of the symptoms associated with oesophageal and stomach cancers, and to encourage those who noticed symptoms to go to their GP. The primary key message for both campaigns was: 'Having heartburn, most days, for 3 weeks or more could be a sign of cancer - tell your doctor', with a secondary message of: 'Food sticking when you swallow could be a sign of cancer - tell your doctor'.

The evaluation found that these campaigns were successful in raising awareness of oesophago-gastric cancers, and in motivating people to see their GP with symptoms. We saw an increase in the number of urgent GP referrals for suspected cancer and the number of endoscopies performed, but we did not see an impact on the stage of the disease at diagnosis.
Treatments: CancerData update for 2016 data - 8th April
On 8th April, NCRAS will publish population based statistics on patients recorded to have chemotherapy, radiotherapy, and surgical tumour resections for tumours diagnosed between 2013 and 2016 in England.

This release includes a geography tab to allow users to explore the variation by cancer type and Cancer Alliance. Further, a demographics tab allows users to explore variation by cancer type and a choice of age at cancer diagnosis, broad ethnic group, Charlson comorbidity index, income deprivation, sex, stage at cancer diagnosis, and year of cancer diagnosis.
Other news
Now recruiting four new clinical leads
We are now looking to recruit four new clinical leads to support our data and analytical work across NDRS. These will be part-time secondments. Each lead will be a recognised expert in their field and we are particularly seeking experts in radiotherapy, systemic anti-cancer therapy, haematology, and congenital anomalies and rare diseases.

Please get in touch with Brian Rous for an informal discussion about the radiotherapy, systemic anti-cancer therapy, haematology roles, and Sarah Stevens for the congenital anomalies and rare diseases role.

All applications should be received by 5pm on 20th March 2020.
Partnership programme manager vacancy
Do you have strong people and project management skills, and experience of working in partnership with a range of people and organisations? Are you a strong communicator and enjoy finding solutions to complex challenges? Then you might be interested in an exciting opportunity here at Public Health England. This is a fixed term contract to end March 2022 (secondments welcome). The closing date is the 24th March.
COSD Newsletter
In January and February, we visited seven locations across England as part of our COSD and cancer roadshows ahead of the latest version of COSD going live from April 2020. We engaged with over 500 members from NHS Trusts at these events, to inform them about the changes in the updated COSD dataset, and showcase examples of how cancer registry data is supporting important clinical initiatives such as cancer audits.

We also provided an update on our work on raising awareness of cancer registration, the importance of letting patients know their data is being collected, and how they can opt-out, should they wish.

You can view the newsletter here or subscribe to our regular COSD newsletter via this link.
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