April 2024

Each month we share the latest news from the National Disease Registration Service (NDRS) including recent publications, data releases and upcoming events including our new webinar series for 2024.

NDRS is part of NHS England and collects data from the NHS about cancer, rare diseases and congenital anomalies in England.

NDRS includes the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS). NDRS uses data provided by patients and collected by the NHS as part of their care and support. NDRS uses this data to detect changes in the health of the population and to help the NHS improve the diagnosis and treatment of these diseases.

You might have noticed we have freshened the look of our newsletter. Please let us know what you think and if we should be including anything useful. 

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Data releases and publications

Detailed Cancer statistics from Get Data Out (GDO) 2013-2020 treatment and survival data

The Get Data Out programme from the National Disease Registration Service has released new detailed statistics on treatment and survival for cancer patients diagnosed between 2013 and 2020, for all 18 of the current GDO cancer sites. We have also published 2013 to 2020 incidence, treatment, and survival data for a new site, “Lung, mesothelioma, and other thoracic”. The data is available in an open format for anyone to access and use. 

Rapid Cancer Registration Data (RCRD) Incidence and Treatment dashboard monthly update

Our Rapid Cancer Registration Data (RCRD) Incidence and Treatment dashboard continues to be updated with data for recent months, with the latest monthly update including diagnoses up to December 2023 and treatment data until at least August 2023. The latest update also added data by integrated care board (ICB). There is a public dashboard, currently on CancerData, and a secure access CancerStats2 version (requires a secure HSCN connection to access) which provides further breakdowns of the data for local services. The public dashboard was also recently updated to present early-stage proportion data using 12-month rolling periods.

We have also released a usage survey for the RCRD dashboard, which will help us understand how the dashboard is being used. We encourage as many users as possible to complete the survey to inform future dashboard changes.

NCARDRS Congenital Anomaly Official Statistics Report, 2021

NCARDRS Congenital Anomaly Official Statistics Report, 2021 was published on 28 March. This publication contains information on congenital anomalies detected in babies delivered in England between 1 January and 31 December 2021.  This is the seventh annual congenital anomaly statistics report released by the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) and the fourth report to contain national data for England and for the first time, we report on the relationship between congenital anomaly total birth prevalence (per 10,000 total births) and deprivation

New Somatic Molecular dashboard

On the 4 April 2024 the NDRS Genomics team published a new public-facing Somatic Molecular dashboard. The Somatic Molecular dashboard presents counts of tumours tested for somatic aberrations (i.e. genetic alterations giving rise to and occurring in cancers) in England from 2016 to 2021 by gene/ chromosome tested. The data can be further explored by tumour site, diagnosis/ testing year and results.

This new somatic dataset is an important and exciting data resource. The Somatic Molecular Data dashboard allows users to explore, at top level, the data found in this dataset. For more information please see the Somatic Molecular dashboard.

New public SACT activity and RTDS dashboards

We are pleased to announce that we published the new public-facing Systemic Anti-Cancer Therapy (SACT) activity dashboard and Radiotherapy Dataset (RTDS) dose and fractionation dashboard on Thursday 28 March. Please note, these expand upon and replace the SACT and RTDS COVID-19 dashboards.

Both dashboards will be updated quarterly to include 3 months of newly submitted data, when provider submission rates allow.

The SACT dashboard presents SACT activity metrics relating to patients treated with SACT in England from January 2019 to August 2023. The dashboard includes patient, regimen, new regimen, and drug administration counts. Counts can be viewed nationally, by cancer alliance, and by integrated care board. Counts can be broken down by tumour group, age group, deprivation quintile, ethnicity, intent of treatment, and administration route.

The RTDS dashboard presents RTDS activity metrics relating to patients treated with radiotherapy in England from January 2019 to January 2024. The dashboard includes episode counts which can be viewed nationally, by cancer alliance, and by integrated care board. Counts can be broken down by tumour group, age group, deprivation quintile, ethnicity, intent of treatment, fractionation category, and dose fractionation schedule.

You can find out more about both dashboards through the 2024 NDRS Spring Webinar series.

Childhood cancer survival in Europe paper published

A paper was published in the EJC Paediatric Oncology which reviews studies on prevalence of Childhood Cancer Survivors in Europe. Data on childhood cancer prevalence help with planning of health care for survivors. The paper found that information on childhood cancer prevalence in Europe is not comparable and varied designs of prevalence studies lead to different estimates. They concluded a standard methodology is needed to monitor prevalence of childhood cancer survivors. 

Events and webinars

Our series of lunchtime webinars began on 26 March. All sessions are recorded and will be made available on the NDRS website so you can watch at another time. Please click on each link below for more information and to register for free.

The aim of the webinar series is:

• to help you navigate our information, resources and outputs more efficiently
• to support knowledge transfer and improve understanding of the methodologies or processes behind our work

• to provide an more in-depth look at some of our new data releases and resources

Congenital Anomalies: Data Sources, the registration process and Official Statistics

Thursday 25 April 12-1pm

Breast cancer mortality

Thursday 23 May 12-1pm

Using SACT and Radiotherapy outputs to support improved patient care in England

Thursday 30 May 12-1pm

Visit our website for more information and to book your place.

Bowel cancer awareness month

April is bowel cancer awareness month. We thought we would take this opportunity to tell you about some of the important work on Lynch Syndrome.

Lynch syndrome (LS) is an inherited condition that causes an increased risk of several cancers – mainly cancers of the large bowel and the endometrium (womb lining), but people with LS are also at elevated risk of other cancers too. LS is caused by harmful variants in the mismatch repair (MMR) genes. If the MMR machinery is not working properly, a person’s body cells have limited ability to correct DNA mutations, so cancer is more likely to develop.

People with LS are offered regular screening by colonoscopy, so that bowel cancers can be detected at an earlier, more treatable stage. However, it is thought that only 5% of people with LS have been diagnosed, so there is a real need to identify the other 95%.

The genomics team in NDRS have been working with collaborators at Newcastle University, we used cancer registration records to follow up LS patients who took part in the CAPP2 trial of aspirin and resistant starch. This work showed that aspirin taken for two years halved the risk of bowel cancer over the next decade. Resistant starch prevented 60% of cancers of the upper gut.

Last year we established the National Lynch Registry, so now have details of everyone in England who has been diagnosed with LS. Each time a new diagnosis is made, the clinical geneticist will add the new patient to the registry – a simple task, thanks to our award-winning data upload portal. Every day, we send the LS patient details to the National Bowel Cancer Screening Programme (BCSP), who invite people with LS for regular colonoscopy. This single national system was launched in summer 2023, and has resolved the historical problem of regional inequities in how LS patients were recalled for colonoscopy.

Additional useful resources

Please see some of our useful resources below: