NDRS Newsletter 19 February 2021
Each month we share the latest news from the National Disease Registration Service (NDRS) including recent publications, data releases and upcoming events. 
This month, NDRS share the publication of several studies, many of which centre around the impact of COVID-19. We are also pleased to announce our plan to mark Rare Disease Day on the 28th February.

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
Updated CancerStats2 user guide now available
A new user guide has been developed showcasing the content available via the CancerStats2 reporting platform and the work of NCRAS.

CancerStats2 is a platform providing operational feedback to key stakeholders of NCRAS such as medical professionals, hospital cancer teams and commissioners to drive the quality and completeness of cancer data and improve outcomes for cancer patients. It enables key stakeholders of NCRAS to generate reports using NCRAS data on a self-service basis. This is a secure platform, powered by a statistical software solution (SAS) and requires an N3/HSCN secure network connection.
Revised copy of the NCRAS cancer registration data dictionary published
Last month the Office for Data Release (ODR) launched a revised copy of the NCRAS cancer registration data dictionary (version 4.3). This updated workbook introduces:
  • Cancer pathway summary table of events from the Cancer Registry, Systemic Anti-Cancer Therapy (SACT), the Radiotherapy Data Set (RTDS), Cancer Waiting Times (CWT), and the Diagnostic Imaging Dataset (DID).
  • National Cancer Diagnosis Audit (NCDA) primary care data on the diagnostic pathway for patients diagnosed with cancer in 2018.
  • Wave 9 of the National Cancer Patient Experience Survey.
Report on complete cancer prevalence published
This month, NDRS have published a report on complete cancer prevalence for the United Kingdom 1948-2013. At the end of 2013, over 2 million people in the UK were alive following a cancer diagnosis. This is one of many outputs from the Macmillan-NCRAS UK Cancer Prevalence Project.
Paper published on quality of life after bladder cancer
The NCRAS Analytical team have co-authored a paper on quality of life after bladder cancer. The paper finds that quality of life after bladder cancer is worse than other pelvic cancers. Quality of life is largely unaffected by stage and treatment, but more so by age and co-morbidity.
COVID-19 Cancer Equity Data Packs published by the Cancer Alliance Data, Evidence and Analysis Service (CADEAS)
CADEAS, in collaboration with NCRAS, have published two COVID-19 Cancer Equity Data Packs, with a first release for the data pack on first definitive treatments and the latest monthly update for the data pack on urgent suspected cancer Two-Week Wait referrals. These packs present monthly activity data up to November 2020, at national and regional level, by tumour type and patient factors: deprivation, age, sex and ethnicity.
Study published in the British Journal of Cancer using NDRS' stage at diagnosis data
Using NDRS' high quality stage at diagnosis data, a study examining socio-demographic differences in stage at diagnosis of ten common cancer sites was published in the British Journal of Cancer, together with an accompanying editorial. Increasing age and deprivation were associated with greater risk of diagnosis at an advanced stage, though the shape and size of these inequalities varied substantially for different cancers. In 2015, eliminating age, deprivation and sex inequalities in stage at diagnosis across the ten studied cancers would have increased the percentage of patients diagnosed at an early stage from 57% to 61%, making an important contribution towards attaining the Government target of 75% of all cancer patients being diagnosed at early stage by 2028.
First Somatic Molecular Report released by the Molecular and Genomics team
The NDRS Molecular and Genomics team have released the first Somatic Molecular Report to provide feedback to NHS laboratories across England. This report is available on CancerStats2 and aims to show a clear picture of the somatic testing data submitted to NDRS by laboratories performing molecular diagnostics directly on tumours or cancer-derived material. The report presents a series of graphs displaying various counts for each laboratory, broken down by variables such as tumour tested, gene tested, method, test result and aberration type, as well as an option to select diagnosis and testing year for somatic tests performed in 2016 and 2018.
Study published assessing the impact of the COVID-19 pandemic on radiotherapy services in England, UK
A paper on the impact of the COVID-19 pandemic on radiotherapy services in England, UK has now been published by Lancet Oncology. Following the publication of the Radiotherapy Data Set (RTDS) COVID dashboard on CancerStats2, the RTDS team have been working in collaboration with the University of Leeds. The study, using the rapid and detailed data collected on radiotherapy activity in the RTDS, shows that radiotherapy services in England have rapidly adapted patient’s treatments in response to the need to reduce the risk of cancer patients contracting COVID-19.
Paper published on sample sizes of prediction model studies in prostate cancer
A paper has been published in the Journal of Clinical Epidemiology from a partnership between University College London (UCL) and NCRAS. The paper finds that clinical prediction models for prostate cancer are often based on an insufficient sample size.
Radiotherapy (Adults) Quality Dashboard reports published
The Radiotherapy (Adults) Quality Dashboard contains a number of metrics for radiotherapy providers. The data for these metrics are provided by PHE to the Quality Surveillance Team (QST) at NHS England to produce the Radiotherapy (Adults) Quality Dashboard. These reports are now available on CancerStats2 for providers to view the data.
Updated version of the Simulacrum released by Health Data Insight (HDI)
NDRS’ HDI partnership have released an updated version of the Simulacrum containing two additional years of diagnostic data (2013 – 2017 diagnoses) and treatment up to March 2018. Simulacrum is an artificial simulated dataset created using patient and treatment data collected and maintained by NDRS. It can be used to gain insights into the structure and completeness of NDRS data and as a test bed for code and analysis. The new version of the Simulacrum contains five complete years of registered patient data compared to three years in the previous version, as well as over 900,000 new tumours. The vital status of each synthetic patient is now simulated up to February 2019.
Upcoming data releases and publications
NCARDRS' new Workplan to be released on Rare Disease Day
To coincide with Rare Disease Day on the 28th February, NCARDRS will be publishing its new Workplan. Building on what the service has achieved to date, the Workplan outlines NCARDRS’ strategic vision to 2024. It contains five priorities with a set of deliverables under each, and has input and support from patient groups, clinicians and academics. A link to the Workplan will be shared in next month’s newsletter.
Further news
NDRS have achieved the Patient Information Forum (PIF) TICK certification
In January NDRS achieved certification from the PIF as a producer of high-quality health information. Through this certification NDRS joins fifty other health organisations in achieving the UK-wide PIF TICK Quality Mark for health information and commits to ensuring a continuing high-quality for any future public information produced.
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