October 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 conditions.

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Data releases and tools

Cancer Registration Statistics, England 2023

We published the Cancer Registration Statistics, England, 2023 today, 30 October 2025.

Sub-national breakdowns have also been published on our interactive dashboard for data up to 2022. At the time of publication, we were unable to publish breakdowns by sub-national geographies and deprivation for 2023 due to small area population statistics being unavailable.  We expect to publish an update to our dashboard early in 2026 with these additional statistics.

If you would like to provide feedback on the Cancer Registrations Statistics publication please fill out our short online questionnaire.

NCARDRS Congenital Condition Statistics Report 2022

We released the Congenital Condition Official Statistics for 2022 on 23 October 2025. This publication is the eighth annual congenital condition statistics report released by NCARDRS, and marks a milestone of 5 years of national data. The publication contains information on congenital conditions detected in babies delivered in England between 1 January and 31 December 2022, and presents counts and rates of congenital conditions for England, for the nine former Government Office Regions and by the 42 Integrated Care Boards (ICB) as well as by age at delivery, Index of Multiple Deprivation quintile, and timing of detection, by 12 major condition subgroups. Counts and rates are also presented for 115 condition groups and individual conditions.

Alongside the Official Statistics, we also published a blog to celebrate 10 years of how NCARDRS has been transforming data into action for rare and congenital conditions.

RCRD dashboard update

We updated cancer site groupings in the recent monthly update of our two Rapid Cancer Registration Data (RCRD) Incidence and Treatment dashboards, mainly with some minor renaming but also resulting in more specific reporting for lung cancers and additional data breakdowns for colon and rectal cancers – see the dashboard’s update log for more details. The latest update included diagnoses up to July 2025 and treatment data until at least January 2025. 

There is a public dashboard available on the Cancer Data Hub on the NDRS website and a secure access version on CancerStats2 (requires a secure HSCN connection to access).

NHS to screen all new-born babies for life-threatening rare metabolic disorder - Hereditary Tyrosinaemia Type 1 (HT1)

The UK National Screening Committee (UK NSC) have recently recommended new-born blood spot screening for Hereditary Tyrosinaemia Type 1, a rare, genetic condition affecting around 7 babies per year in the UK. This is one of 10 rare conditions screened for in the new-born blood spot testing, which is a screening test to understand whether babies have any of 10 rare conditions, some of which can be life-threatening. New-born screening allows an early diagnosis and treatment which can improve outcomes. If untreated HT1 can cause long-term health problems, including liver and kidney disease. Early diagnosis and treatment can potentially reduce the number of babies with HT1 who experience severe liver disease in the early months of life, and can potentially reduce the number of babies with HT1 who need a liver transplant in later life.

NDRS already collects data from laboratories about some of the conditions screened on the new born blood spot, and HT1 has now been included in this data collection, adding to the rare conditions register. NDRS colleagues recently attended the UK New-born Screening Laboratory Network (UKNSLN) meeting where they presented an overview of the rare conditions register and the updated collection template for new-born bloodspot data collection. Representatives from all the new-born screening laboratories for England were in attendance and had the opportunity to engage with us in our work.  
The UK NSC uses in-service evaluation (ISE) to support its screening recommendation process and inform wider policy decisions about screening. Although not directly involved in the ISE for HT1, we hope that NDRS data can be used to support ISEs in future.

Cancer Drugs Fund (CDF) paper (Durvalumab)

The journal article "Durvalumab in locally advanced unresectable non-small cell lung cancer – benchmarking real-world outcomes in England against published trial data", was published in the Lung journal 30 September 2025. This is the first of a trio of papers to be published to demonstrate the value of using SACT data in drug reappraisals. This paper compares patient characteristics and survival outcomes of patients in England who received durvalumab during the CDF funding period against those of the phase III PACIFIC trial. The findings highlight that despite some differences in baseline characteristics, durvalumab in routine practice produced median overall survival outcomes comparable to the trial (50 months vs 48 months). 

BAD-NDRS Partnership wins Award for Best Collaborative Partnership 

The British Association of Dermatologists (BAD) and NDRS partnership, established in 2020, is a collaborative and multidisciplinary team with clinical, epidemiological, and analytical expertise. Using the high-quality NDRS data, the partnership aims to support patient care and education, healthcare planning and research. The NDRS data has fed into the BAD's work and is used to champion improvements in dermatology care, equity, and outcomes. As a big recognition of this important work the BAD-NDRS partnership has won the Memcom - Best Collaborative Partnership Excellence Award, which celebrates this powerful partnership which has delivered a measurable impact and long-term value. 

NDRS updates

Updated cancer registration leaflet

We have recently updated the Cancer Registration Patient Information leaflet to Version 8.1 (September 2025). The revised version provides more up-to-date data and hyperlinks and has minor wording changes for better readability. This is available as a digital version.