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NDRS newsletter
September 2025
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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Data releases and tools
Post-colonoscopy colorectal cancers (PCCRCs) paper published
Health Data Insight (HDI) and NDRS colleagues have published a paper titled National root-cause analysis of 1724 post-colonoscopy colorectal cancers demonstrates avoidable harm. This paper describes the nationwide audit that investigated the causes and consequences of PCCRCs, which occur despite a recent negative colonoscopy. Using national datasets and a standardised review process based on World Endoscopy Organisation guidelines, over 2,800 PCCRCs were identified and 1,724 reviewed. The audit revealed that 69% of PCCRCs were avoidable and 44% caused moderate to severe harm or premature death. Missed or incompletely resected lesions were common causes. Non-procedural factors contributed to 27% of cases. The study highlights procedural shortcomings, training gaps, and system delays, offering critical insights for reducing PCCRCs and improving early cancer detection.
Publication of report 'Faster Diagnosis Standard: Variation in performance on the Faster Diagnosis Pathway
The Cancer Research UK - NDRS partnership team have analysed referrals on the Faster Diagnosis pathway leading to a diagnosis, or a ruling out, of cancer from October 2021 to June 2024. This analysis calculates performance across the study period, median waiting times and proportion waiting in each week post-referral. Additional breakdowns by suspected cancer type, age group, gender and deprivation quintile are also provided.
Radiotherapy Catchment Populations
NDRS published the annual refresh of the Radiotherapy Populations report which you can download from the NDRS website. This report combines activity data from the Radiotherapy Data Set (RTDS) (April 2023 to March 2024) with geographical population data provided by the Office for National Statistics (ONS) (2022). It supports the planning of radiotherapy services by defining the number of people within each service's catchment areas and their geographical location.
2022 Cancer Prevalence Statistics published
On 28 August we released 2022 Cancer Prevalence Statistics for England showing 2,446,340 (4283.37 per 100,000) people were living with and beyond cancer (diagnosed since 1995). This is an increase from 2,347,781 (4151.33 per 100,000) people reported in 2021 statistics. You can access the dashboard and download the data from the NDRS cancer data hub. Data are reported for England, Cancer Alliances, Integrated Care Boards and Local Authorities; for all cancers combined and by cancer site.
SACT v4.0 coming April 2026
The Systemic Anti-Cancer Therapy (SACT) data set is being updated to version 4.0, with start of data collection expected to be starting from 1 April 2026. NHS England has published updated documentation to support local system changes which is available via the NDRS SACT webpage.
NDRS is working with trusts and systems suppliers to support their preparations for roll-out.
Events
Webinar Series: Accessing NHS England Data for Research
In July, CRUK and NHS England hosted a webinar for researchers, introducing the Data Access Request Service (DARS) and available NHS data for research. A follow-up session is planned for 27 November, offering deeper insight into DARS and services like the Secure Data Environment (SDE), OpenSAFELY, and NHS DigiTrials.
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