June 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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NDRS News

Congratulations to Professor Judith Rankin

NDRS would like to send warmest congratulations to Professor Judith Rankin, (professor of Maternal and Child Health in the Population Health Sciences Institute, Newcastle University) who has been appointed Officer of the Order of the British Empire (OBE) for services to Maternal and Child Health and Research Inclusion in the 2025 King's Birthday Honours.

Professor Rankin has published widely in congenital anomaly research and has worked closely with the team at EUROCAT. She championed the move from regional data collection to national data collection of congenital anomalies in England at the inception of NCARDRS, advocating for the need for population level data to inform clinical practice, and provided research support and advice to the Service for its first 10 years on an Honorary contract. Professor Rankin was recently announced by the NIHR as a Senior Investigator and was appointed as co-lead for Research and Capacity Development for the NIHR Maternity Disparities Consortium. We look forward to further collaboration in identifying inequalities in care and supporting improvements in pregnancy and child health outcomes in the context of congenital anomalies and rare diseases.

Data releases and tools

Update to Cancer Registration Statistics

We have published an update to the Cancer Registration Statistics. Incidence counts and rates for England have been re-stated for cancers diagnosed between 2012 to 2022, reflecting the updated populations available using the 2021 census. Counts and rates have been provided for Persons in addition to Males and Females. The publication can be found at Cancer Registration Statistics, England, 2022 - NHS England Digital. 

Look out for an update later this summer which will include incidence counts and rates for small geographic areas including Upper Tier Local Authority (UTLA) 2024 boundaries, Local Authority District / Unitary Authority (LAUA) 2024 boundaries and Middle layer Super Output Area (MSOA) using census 2021.

Cancer Treatments dashboard 2013 to 2022 publication

The Cancer Treatments release for 2013 to 2022 diagnoses was published on 29 May. 

This tool presents updated radiotherapy, Systemic Anti-Cancer Therapy (SACT) and tumour resection data for patients diagnosed with cancer in England by demographic factors at diagnosis. These include cancer site, year, stage, age, gender, deprivation, ethnicity, comorbidities, and also by Cancer Alliance.

For the first time, tumour resection data has been published on the following cancer types: blood (haematological neoplasms), eye, heart, mediastinum, pleura, mesothelioma, thymus, other and ill-defined cancer.

The code is available on GitHub and the updated SOP (v4.10) contains detailed methodological information.

Paper published on synthetic data 

The Health Data Insight CIC (HDI) and NDRS partnership has published a paper titled 'Leveraging Synthetic Data to Facilitate Research: A Collaborative Model for Analyzing Sensitive National Cancer Registry Data in England' in the journal Therapeutic Innovation & Regulatory Science.

The paper describes a collaborative working model between NDRS, HDI and external researchers, that enables researchers to perform analysis on the patient-level data held by NDRS, without ever having to see or access the data themselves. This is done through the use of Simulacrum, a synthetic dataset that mimics datasets in the CAS. It demonstrates how synthetic data can and are being used to enable efficient research in a privacy-compliant way, where there is a suitable operating model in support. 

For more information on the Simulacrum and how it can be used to access NDRS data please go to  The Simulacrum - NDRS.

NDRS User Research Opportunities

We are always looking for opportunities to embed user led approaches in our work and to continually assess and improve the service based on user feedback. Find out more about the NDRS User-Centred Design (UCD) principles on our website.

If you would be interested in supporting us by providing feedback on our outputs, please complete the online registration form below. You can decide which projects you would like to engage with and you can opt-out at any time.

We are currently asking for feedback on our Cancer Registration Statistics outputs via a short online questionnaire, helping us to understand what is working well and where we can make things better. If you are interested in taking part please complete this in addition to signing up to the NDRS user research register.