April 2026

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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Data releases and tools

NDRS named as a finalist in the British Data Awards 2026

NDRS is thrilled to have been named as a finalist in the British Data Awards 2026 which honours the most impactful and innovative use of data in the UK across industry, academia and the public sector.  

NDRS has been shortlisted in two categories:

• Data for Good Award – for its work on the National Inherited Cancer Predisposition Registry (NICPR), recognising the impact of this resource in improving patient care and outcomes.
• Healthcare Organisation of the Year – for its extensive work in cancer, rare diseases, and congenital conditions. 

The award winners will be revealed at a ceremony in London on 20 May 2026.

Update to the Accredited Official Statistics on cancer survival

On 9 April, NDRS released an update to the Accredited Official Statistics on cancer survival. This can be found here: Cancer Survival in England, cancers diagnosed 2018 to 2022, followed up to 2023.

This publication summarises the survival of adults aged 15 to 99 years diagnosed with cancer in England between 2018 and 2022 with follow-up to the end of 2023. Adult cancer survival estimates are presented by cancer group, age at diagnosis, deprivation, gender, geography, and stage at diagnosis. NDRS cancer groups are now used to present survival estimates for adult cancers. Additional methodological changes have been implemented and these are described in the methodology change notices which accompany the publication.

Childhood survival estimates are expected to be published in the coming weeks.

Annual update to cancer services profiles now live on Fingertips

We released the annual update, of the Cancer Services profiles on Fingertips, The profiles publish GP practice-level data for a range of metrics which focus on primary-care-relevant cancer activity, including cancer screening, diagnostic testing and urgent suspected cancer referrals. Most metrics were updated to include data for the 2024/25 financial year.

NCARDRS submission to the International Clearinghouse for Birth Defects Surveillance and Research

NCARDRS has submitted data describing the birth prevalence of selected congenital conditions in the 2021 and 2022 birth cohorts to the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR or Clearinghouse in short), a voluntary non profit International Organisation affiliated with WHO. 

First established in 1974, the organisation now has 42 member programmes worldwide. NCARDRS has been a member since 2017 and has now submitted aggregate data covering birth years from 2015 to 2022. The data is pooled with other data from registers around the world and published in the form of reports by programme and by condition enabling comparison of birth rates with congenital conditions with other countries and pooling number of rare conditions to improve what we know about them. More information on the Clearinghouse and how they use the data can be found at their website https://www.icbdsr.org/.

Publication of Cancer Drugs Fund paper (Daratumumab with bortezomib and dexamethasone)

The journal article "Daratumumab, bortezomib and dexamethasone for previously treated myeloma - Real-world outcomes for 2545 patients treated in England” was published in the British Journal of Haematology in March 2026.

This is the second of a trio of papers that demonstrates the value of using SACT data in NICE CDF drug reappraisals and the benefit to patients in a real-world setting.

NDRS Data study on cancer costs across eight cancer sites

A paper published in Lancet Oncology as part of the work between the Health Data Insight (HDI)-NDRS partnership and GRAIL. NDRS contributed data and provided advice for this study which examined cost by stage at diagnosis in eight different cancer sites diagnosed between 2013-2017.  The main results of the paper were that costs varied by stage, but also importantly by cancer site with mixed patterns depending on the cancer. The paper focused on modelling whilst a repository of other project results was also published. 

BJC publishes Multi-Cancer Early Detection (MCED) modelling study using NDRS Data

The paper Modelled impact of a multi-cancer early detection screening programme on the demand for diagnostics in England, based on NDRS data, was published online in the BJC. The main results were that the impact of plausible roll-out scenarios for MCED testing on diagnostic demand were likely to be small, but largest for colonoscopy and gastroscopy.

NDRS Scientific journal library

We invite you to explore the NDRS scientific journal library and discover the valuable insights and findings that contribute to the fight against cancer: Explore the NDRS scientific journal library.