December 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 Condition 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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Message from Sarah Stevens, Deputy Director

Reflecting on 2025 – A year of impact and innovation

As we close out 2025, it’s inspiring to look back at the incredible progress across NDRS. This year has been defined by collaboration, innovation, and continued delivery; all the more impressive given the organisational uncertainty. Here are just a few standout achievements: 

World first: launch of NICPR – The National Inherited Cancer Predisposition Registry is the first of its kind globally, transforming fragmented genetic data into a prevention-driven system. Over 65,000 submissions, 14,000 bowel screening referrals, and 1,500 VHR breast screening referrals have already been processed. 

AWS migration complete – All core NDRS services successfully migrated to the cloud, improving resilience and scalability. 

Official Statistics for England – We released the Congenital Condition Official Statistics for 2022, marking a milestone of 5 years of national data. These provide geographical breakdowns to ICB (Integrated Care Board) levels for the first time. 

We also released the Cancer Registration Statistics for 2023, reporting on cancer registrations and deaths in England in 2023, alongside an interactive dashboard to explore the data. The publication also includes sub-national breakdowns to 2022, with additional breakdowns on 2023 data to follow next year.  

Privacy Enhancing Technologies (PETs) for international cancer registry collaboration – we led a proof of concept pilot, working with colleagues from the National Cancer Institute in the US and the UK Government Digital Service. The aim was to assess the feasibility of using PET enabled federated analytics for international analysis of rare childhood cancers.  The PET landscape has great potential to develop further, with NDRS leading the way in adoption and innovation.  

The British Association of Dermatologists (BAD) and NDRS partnership, established in 2020, is a collaborative and multidisciplinary team with clinical, epidemiological, and analytical expertise. The partnership aims to support patient care and education, healthcare planning and research. As a big recognition of this important work the partnership has won the Memcom - Best Collaborative Partnership Excellence Award, which celebrates our measurable impact and long-term value. 

Get Data Out release of new treatment data and visualisations – This year, we published treatment statistics for the 2022 diagnosis year with a refresh of the 2013-2021 treatment data. The interactive dashboard contains a new tab of visualisations for the first time, allowing users to graphically explore the GDO data.   

Continued delivery against commitments in the UK Rare Disease Framework -led national standardisation of rare disease data through the launch of the Rare Disease Dataset, expanded coverage of rare conditions in our rare conditions registration statistics, invested in our infrastructure and supported UK-wide collaboration in the RD data and research space.  

Supporting the evaluative roll out of Non Invasive Prenatal Testing (NIPT) - We are providing laboratory test surveillance and monitoring the test characteristics, accuracy and diagnostic outcomes for pregnancies. The data was used by the UK National Screening Committee to enable them to make decisions on next steps for NIPT. Key results from NIPT reporting on the evaluation received an overwhelming positive response from the committee. 

This is a snapshot of the breadth of work taking place across NDRS with our BAU activity underpinning the successful delivery of it all. 

Looking ahead to 2026, we remain focused on delivering timely, high-quality data and insights, driving improvements in population health and patient outcomes, and continuing to innovate. 

Thank you for your continued support, dedication and passion throughout the year.  

Wishing you a happy and healthy new year!

Sarah

Data releases and tools

Cancer Quality of Life Survey data dashboard update

The Cancer Quality of Life Survey data dashboard has been updated to include 6-months of additional data. The updated dashboard now includes data 775,135 people invited up until September 2025, and responses received up to 11 November 2025.

Changing our language from congenital anomalies and rare diseases to 'conditions' 

The launch of our Congenital Condition Official Statistics, England for 2022 NCARDRS Congenital Condition Official Statistics Report, 2022 - NHS England Digital marks a small change in our language, moving to replacing ‘anomalies’ with ‘conditions’, and for ‘diseases’, where possible. This follows similar changes by others, including Scotland, and has been driven by patient and carer feedback. We are taking the word 'anomaly' out of NCARDRS but are retaining its acronym: National Congenital condition And Rare Disease Registration Service. We will keep 'disease' in both NDRS and NCARDRS. 

Our recent blog, Transforming data into action for rare and congenital conditions - NHS England Digital, celebrating 10 years of NCARDRS, also uses the updated language.