NDRS Newsletter 15 May 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 an update on the NDRS response to COVID-19, the latest version of the NCRAS data dictionary, the updated Blood Cancer Dashboard, and the new data release for 30 day post SACT mortality.

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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Update on the NDRS response to COVID-19
NDRS continues to play a significant part in PHE's response to the coronavirus pandemic. Here we provide some examples of the work we have been doing to support the NHS and wider health system.

Building PHE's contact tracing application
At the beginning of the outbreak, the NDRS IT team were responsible for setting up a web based contact tracing application, which was built in only 9 days. PHE is now repurposing it to run on a much bigger scale as part of the Test, Track and Trace programme. The NDRS IT team are involved in the development of this system, now called the Contact Tracing Advisory Service (CTAS).

Understanding the impact of COVID-19 on cancer services
We are developing reports on CancerStats2 to understand the clinical impact of COVID-19 on oncology services. The first report will use data from the Radiotherapy Dataset (RTDS) to display how utilisation of radiotherapy has been affected and possible changes to dose and fraction patterns for major tumour groups during the pandemic. This intial report is due to launch by the end of May and we will include further information in next month's newsletter.

Assessing the impact of COVID-19 on patients with congenital anomalies and rare diseases
We are currently drawing up analytical plans to assess the direct and indirect impact of the pandemic on the epidemiology, detection, treatment and outcomes of congenital anomalies and, where sufficient data is available, rare diseases. We are undertaking this work in collaboration with our counterparts at CARIS the Congenital Anomaly Register and Information Service for Wales. We are also working with a small team at the University of Nottingham and are in the final stages of establishing enhanced surveillance of the effect of COVID-19 on people with rare autoimmune, rheumatic disease, and assessment of potential resulting health inequalities.

Linking new datasets together to help COVID-19 research
The NDRS manages many different types of datasets about cancer and rare diseases and can link to datsets in the NHS to widen our research ability. We are experts on linking datasets together and we also have a dedicated Data Liaison team who help to troubleshoot data issues and improve data quality. With our expertise we have been advising colleagues within PHE and NHS Digital (NHSD) on how to link data and how to share data more efficiently across the healthcare system so that researchers can get access to the data they need safely and securely to understand the effects of COVID-19 on the public and health care system.

If you have any questions relating to NDRS work on COVID-19 please contact NDRSengagement@phe.gov.uk
Data releases and publications
Secondary Care Diagnostic Intervals
Last month as part of our partnership with Cancer Research UK, we published an updated CancerData tool for Secondary Care Diagnostic Intervals (SCDI), along with a statistical commentary.

These population-based statictics look at SCDI for patients in England across 24 cancer sites, diagnosed in 2014 and 2015. The diagnostic intervals are broken down by route to diganosis, demographic factors, stage and geography.
NCRAS data dictionary update
The latest version of the NCRAS data dictionary is now available.

This document provides information on the cancer registration data that is available to request from NCRAS through the PHE Office for Data Release (ODR), including field lists and associated metadata.
New data release for 30 day post SACT mortality
In May, we released new information on patients who died within 30 days of recieving Systemic Anti-Cancer Therapy (SACT) to NHS Trusts. This data feed aims to support mortality and morbidity (M&M) meetings and will be provided quarterly; the next release will be available in July. The information has been shared securely with nominated individuals at each Trust.

If you work within a Trust and feel you should have access to this data, please email the helpdesk for more information. Case mix adjusted 30 day post SACT mortality data will be available on our website from June.
Be Clear on Cancer metric summaries
We continue to release summaries that measure the impact of PHE's Be Clear on Cancer (BCoC) campaigns, which encourage people with possible cancer symptoms to seek medical help.

This month, we published 7 revised metric summaries for the 2nd national 'Respiratory Symptoms' campaign, following the BCoC's updated methodology document.

We also published a revised metric summary for the 3rd national 'Breast Cancer in Women over 70' campaign which looks at diagnostics in secondary care.
Cancer Statistics: availability and location document

This signposting document provides an overview of the publically available statistics on cancer published by NDR and other organisations. It is a helpful reference guide for users of cancer statistics as well as those who are less familiar with this information.
Paper published on the link between urgent cancer referrals and mortality and stage at diagnosis
We were involved in a paper published in the British Journal of General Practice (BJGP) called 'Association between use of urgent suspected cancer referral and mortality and stage at diagnosis: a 5-year national cohort study'.

Cancer registration data collated, maintained and quality assured by us here at NCRAS, were extracted for cancer patients diagnosed between 2011 and 2015 in England. The study found that there is an association between higher numbers of referrals and lower mortality.

This work has also been in the media due to the impact of COVID-19 on reductions in GP appointments and referrals.
Upcoming data releases
2018 cancer registrations and 2018 stage data - 29th May
On 29th May, the NDRS analytical team will publish two Official Statistics: the full release of the Cancer Registration statistics for 2018 (National Statistic); and the case-mix adjusted percentage of cancers diagnosed at stages 1 and 2 2013 to 2018 (Experimental Official Statistic).

The Cancer Registration statistics will report the cancer diagnoses and age-standardised incidence rates for all types of cancer by age, sex, and region.

The case-mix adjusted percentage of cancers diagnosed at stages 1 and 2 will be available as 1-year and 3-year estimates, by Clinical Commissioning Group for 21 cancer types combined. This will be the first time that this reliable staging data will be published, providing intelligence to help monitor progress towards the 75% ambition.
Update following the cancellation of the Cancer Data Conference 2020
Further to the cancellation of the Cancer Data Conference this year, we are beginning to explore how we might run other events that we have planned for later this year such as our one-day genomics and molecular data event in the autumn. We will bring you more information as plans develops.
Other news
Blood Cancer Dashboard update
NCRAS data was used once again as part of the latest quarterly update to the Blood Cancer Dashboard - a resource developed in collaboration between Janssen and the Blood Cancer Alliance to support clinical leaders, commissioners, providers and Cancer Alliances to better understand how blood cancer services are being delivered in their areas. The latest update saw the addition of NCRAS's emergency presentations data to the existing eight datasets. The new data shows the percentage of people with haematological, colorectal, lung, breast and prostate cancer that presented as an emergency at a national and Cancer Alliance level between July 2017 and July 2019.
IMPaCCt study - Investigating the impact of COVID-19 on caregivers and patients
Queen's University Belfast and Aberdeen University are undertaking a study to try and understand how COVID-19 is impacting people living with or affected by cancer.

The IMPaCCt survey is NOW LIVE and is aimed at cancer patients, patients with pre-cancerous conditions, those with rare diseases and caregivers.
Cancer Research UK blog - How Coronavirus is impacting cancer services in the UK
Cancer Research UK published a blog exploring how COVID-19 is impacting on cancer services across the UK. The blog looks at how primary care, screening, cancer treatments and healthcare staff are being affected, and how these issues are developing.
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