September 2024

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

NDRS is part of NHS England and 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. This data is used to detect changes in the health of the population and to help the NHS improve the diagnosis and treatment of these diseases.

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Latest Publications

Virtual Cardio-Oncology Research Initiative (VICORI) research paper

The VICORI partnership recently published a paper Association of pre-existing cardiovascular disease with administration of fluoropyrimidine chemotherapy in patients with gastrointestinal malignancies in the BMJ Oncology. This paper examines the impact of pre-existing cardiovascular disease (CVD) on the administration of fluoropyrimidine chemotherapy in patients with gastrointestinal (GI) cancers. The research analysed data from over 112,000 patients in England and found that those with pre-existing CVD were 27% less likely to receive fluoropyrimidine chemotherapy, despite being eligible. This cautious approach by clinicians, possibly due to concerns about cardiotoxicity, highlights a critical area for further research. The study underscores the need for better understanding and management of the risks associated with fluoropyrimidine treatment in patients with CVD to avoid unnecessary treatment limitations that could affect cancer outcomes.

Kidney cancer treatment paper published

A newly published paper Variability in Kidney Cancer Treatment and Survival in England: Results of a National Cohort Study has been published in Clinical Oncology. The paper was produced in partnership with HDI. It uses two years’ worth of kidney cancer diagnoses (2017-2018) and describes variation by Cancer Alliance and Trust of receipt of surgery and chemotherapy. The project produced a report in 2022 which has been used as part of evidence to lobby for a kidney-specific NICE guideline.

Emergency diagnosis of cancer paper published in Cancer Epidemiology

A paper on the Predictors and consequences of different pathways to emergency diagnosis of cancer in England: Evidence from linked national audit and cancer registration data has been published online in Cancer Epidemiology. This study uses GP-entered data on emergency referrals from the National Cancer Diagnosis Audit (NCDA), linked to the Routes to Diagnosis (RtD) dataset, for cancer patients diagnosed in 2018. The study found that not all patients who had an emergency presentation of cancer in secondary care (as defined by RtD) started on an emergency pathway, with one third of emergency presenters having initially been referred via an Urgent Suspected Cancer referral. Compared to patients who had a non-emergency cancer diagnosis, those who had an emergency referral from primary care had a 3-fold higher odds of mortality at one month following cancer diagnosis. This risk increased to an 8-fold higher odds of mortality for emergency presenters to secondary care, and a 9-fold higher odds for patients who had both an emergency referral and an emergency presentation.

Data releases and tools

2021 Cancer Prevalence Statistics

On 15 August we released 2021 Cancer Prevalence Statistics for England showing 2,347,781 (4151.33 per 100,000) people were living with and beyond cancer (diagnosed since 1995). This is an increase from 2,247,396 (3974.2 per 100,000) people reported in the 2020 statistics. The public-facing dashboard and data download are available at Cancer prevalence - NDRS (digital.nhs.uk). Data are reported for England, Cancer Alliances, Integrated Care Boards and Local Authorities; for all cancer combined and by cancer site.

Public SACT Activity Dashboard

In July, we updated the public SACT Activity Dashboard with more recent data to include activity from January 2019 to November 2023. The public dashboard is updated quarterly; the next update will be in October 2024. Data can be viewed nationally, by Cancer Alliance, and by Integrated Care Board. Further to this data refresh, we are pleased to announce that the SACT Activity Dashboard has been designated as an Official Statistic.

Cancer site lookup table

We published our new cancer site lookup table on our website. This makes all our groupings publicly available so that stakeholders can see exactly what codes comprise each group we will be publishing on. It also means we can reference and link directly to the lookup, rather than repeatedly include site code lists in each separate publication. 

Events and webinars

Spring webinar series 

On Thursday 5 September, members of the NDRS SACT data set and Radiotherapy Dataset (RTDS) Teams presented the latest cancer treatment activity outputs which NDRS provides. Over 80 attendees joined the session to hear about how the outputs can be used to illustrate areas of variation in practice and to help support improvements in patient care in England.

This webinar was the final session in the NDRS Spring webinar series. Recordings for all previous sessions are available on the 'Webinars’ page on the NDRS website; the SACT and RTDS recording will be available in due course.

Additional useful resources

Please see some of our useful resources below: