NDRS Newsletter 16 October 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 edition, we share the publication of a number of papers, details of the upcoming NDRS webinars, and update on the guide to access NCRAS data and two job opportunities to join NDRS.

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
Break-down by age group of polypharmacy in general population in 2018/2019
Last month NCRAS released two outputs on the use of multiple medications by a patient at the same time, called polypharmacy.

The first output estimates of the size of the general population with polypharmacy broken down by age group between October 2018 and September 2019. Polypharmacy has been estimated using the number of prescriptions per person per month, and as the proportion of people with 10+ drugs per person per month.

The second output estimates of the size of the general population with cardiac polypharmacy broken down by age group in July 2019. Polypharmacy has been estimated using the number of unique cardiac drugs prescribed for a specific purpose dispensed per patient in July 2019, and as the number of cardiac prescriptions per patient in July 2019.

Paper published indicates a significant impact of deprivation on outcomes of men with prostate cancer
NCRAS has contributed to a paper in Cancer Epidemiology on the “Influence of deprivation and rurality on patient-reported outcomes of men living with and beyond prostate cancer diagnosis in the UK: a population-based study.”

It was found that for each EPIC-26 domain, functional outcomes were better for men in the least deprived areas, with clinically meaningful differences observed for urinary incontinence and hormonal function. No effect of rurality was observed.

You can access the paper without cost until the beginning of November.
Data released on cancer survival for 2013-2017 used in cancer modelling papers
NCRAS released a break-down of 5- and 10- year crude and net cancer survival by stage, cancer site and receipt of major surgical resection for 2013-2017. These data have been utilised in three papers that have been published in recent months which focus on modelling the impact of Covid-19 on cancer care.

Effect of delays in the 2-week-wait cancer referral pathway during the COVID-19 pandemic on cancer survival in the UK: a modelling study.

Collateral damage: the impact on outcomes from cancer surgery of the COVID-19 pandemic.

Prioritisation by FIT to mitigate the impact of delays in the 2-week wait colorectal cancer referral pathway during the COVID-19 pandemic: a UK modelling study. 
Paper published on classification of cancer in Adolescents and Young Adults
NCRAS has contributed to a paper in the journal Cancer “A System for Classifying Cancers Diagnosed in Adolescents and Young Adults”, published in Cancer.

The classification is based on site and morphology codes as per the latest ICD-O-3.2 and has been tailored to the characteristic distribution of cancer types arising in people aged 15-39 years, and it is hoped that it will become the international standard for descriptive studies of cancer in this age group.

The paper also contains extensive tables and graphics showing the striking variations in cancer types by age in the United States SEER data.
Public facing tool released by Movember Foundation about prostate cancer symptoms
NCRAS were co-investigators on the Life After Prostate Diagnosis project a few years ago. The project looked at quality of life in men with prostate cancer and the data has been used by the Movember Foundation to develop a new tool to help men with prostate cancer understand the possible impact of diagnosis and treatment on their lives.
Upcoming data releases
Rapid Cancer Registration Dataset to be released this month
NCRAS plans to make the Rapid Cancer Registration Dataset available to researchers and other stakeholders through the Office for Data Release in late October. The dataset contains proxy tumour registrations and some associated events on the cancer patient pathway (e.g. surgery, radiotherapy and chemotherapy).

These registrations are defined using an algorithm that approximates the full cancer registration process but can generate proxy tumours within 4-5 months of the patients ‘real world’ diagnosis. It covers the period from January 2020 to the most recently available data – currently diagnoses in June 2020 – and will be updated monthly by NCRAS.
Cancer Survival in England: adult, stage at diagnosis, childhood and geographical patterns for patients diagnosed follwed up to 2019
On Friday 30th October, the NDRS analytical team will be publishing the National Statistics Cancer Survival in England. This publication presents cancer survival statistics for adults and children diagnosed between 2014 and 2018 and followed up to 2019.

The cancer survival statistics are also presented by stage at diagnosis and by different geographical variations in England, such as Cancer Alliance. This publication has expanded to cover more cancer sites than the previous iteration to broaden the statistics for stakeholders.

This publication will be available on gov.uk with interactive tools available on CancerData.
NDRS Webinar Series - Autumn 2020
This autumn, NDRS is running a series of free webinars to continue to share information about our latest work and developments.

Each lunchtime webinar will focus on a different area of NDRS, and there will be an opportunity to ask questions following the presentation.

If you or your colleagues would like to take part, please sign up for each webinar that you wish to attend.
The Rapid Registrations Cancer Dataset webinar - 21st October 2020
Booking closes midnight Friday 16th October
An overview of the Rapid Registrations Cancer Dataset 2020, which constructs a proxy for the cancer registration dataset.
The SACT Dataset webinar - 4th November 2020
An overview of the systemic anti-cancer therapy (SACT) dataset and the SACT team's analytical work.
The RTDS Dataset webinar - 18th November 2020
An overview of the Radiotherapy Dataset (RTDS) and how the dataset is utilised to improve clinical practice.
Rare Disease Registration webinar - 25th November 2020
An overview of NDRS's work on rare diseases and the benefits of working in partnership for rare disease registration.
Molecular and Genomics webinar - 2nd December 2020
An overview of the molecular and genomic data collected and analysed across NDRS, including congenital anomalies, rare disease and cancer.
Congenital Anomaly Registration webinar - 9th December 2020
An overview of NDRS's work on congenital anomaly registration and analysis.

Other news
NHS England launches Help Us Help You campaign for cancer awareness
Last week NHS England launched itsHelp Us Help You’ campaign. The aim of the campaign is to encourage anyone concerned about cancer to get checked and to keep routine appointments.
Current vacancies in NDRS
NDRS Engagement and Awareness Manager
We have an exciting opportunity for someone already working in the civil service to join the NDRS Engagement and Awareness team on a one-year fixed term contract as an Engagement and Awareness Manager. Key areas of work will include stakeholder engagement, improving public awareness and engagement with NDRS, developing new activities to improve data transparency and leading aspects of our events and conference programme. We are looking for someone confident and dynamic who is experienced in stakeholder engagement and relationship management. Applications close on 28th October 2020.
NDRS Partnership Analytical Lead
The NDRS data projects team is also recruiting. We have another exciting opportunity for someone to join NDRS as the partnerships analytical lead on a fixed term contract to the end of March 2022. This role will lead and oversee complex analysis projects in the department as well as planning and managing a complex analytical work programme. If you have strong analytical expertise, proven leadership and management skills, then we would love to hear from you. Applications close on 29th October 2020.
Congratulations to Professor Michael ‘Mick’ Peake
on being awarded an OBE
We want to congratulate Professor Michael ‘Mick’ Peake on the award of his OBE. Professor Peake is a previous clinical lead for NCRAS and a long-time collaborator in our work. He is being recognised for his work on improving care for lung cancer and mesothelioma patients in the UK.
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