May 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

NDRS Data Driving National Prevention Effort

The NHS Retrospective Genetic Testing Pilot was launched on 16 May, representing a major step forward in using data to save lives. Over the next three years, around 14,500 people across England are expected to be invited for genetic testing, targeting those with a previous diagnosis of high-grade non-mucinous epithelial ovarian cancer, triple negative breast cancer, or bilateral breast cancer who have not yet received testing. Crucially, NDRS identified the eligible cohort by linking the National Cancer Registration Dataset with germline genetic data, enabling a highly targeted, efficient programme. By finding individuals at increased risk of cancer due to inherited genetic faults, this work supports early detection and prevention efforts — showing the power of high-quality data to transform patient outcomes.

First Endometrial Cancer Audit Pilot (ECAP) Report Published

We are pleased to announce that the first Endometrial Cancer Audit Pilot (ECAP) report has been published on the National Disease Registration Service (NDRS) website. This baseline report examines incidence, mortality, and survival rates among women diagnosed with endometrial cancer in England between 2017 and 2019.

Uterine cancer is the fourth most common cancer among females in the UK and the most common gynaecological cancer, with endometrial carcinoma being the most frequent type.

Using routinely collected data from NDRS, this report provides an overview of endometrial cancer, including incidence, mortality, stage at diagnosis, and survival rates. In addition to stage, the report examined the distribution of patient and tumour characteristics, including deprivation (Index of Multiple Deprivation - IMD), ethnicity, and tumour morphology.

Key Findings:

• Increasing incidence: the incidence rate of endometrial cancer in England has increased since 2001 up to the period this report covers (2017-2019).
• Regional variation: diagnosis and mortality rates varied across different Cancer Alliances and Integrated Care Boards (ICBs). The level of variation was greater than would be expected by chance, suggesting real differences between regions.
• Stage at diagnosis differences: stage at diagnosis varied depending on age and geography. Some of this variation may be due to data completeness, but other factors could play a role. Improving the quality and availability of data for people diagnosed with endometrial cancer would help provide more accurate insights and support more informed decision-making.

NDRS data highlights benefits of offering risk-reducing ovarian surgery to women with BRCA1/BRCA2 - related breast cancer

A collaboration between the NDRS and the University of Cambridge has provided solid evidence of the benefits of offering surgical removal of the ovaries and fallopian tubes to women with a genetic form of breast cancer.

As well as holding national data on cancer diagnosis and survival, NDRS collects genetic testing data from NHS laboratories across the country. These two linked NDRS datasets enabled the research team to identify 3,400 women with breast cancer who had harmful genetic variants in their BRCA1 or BRCA2 genes. This NDRS data cohort was linked with Hospital Episode Statistics (HES) data on bilateral salpingo-oophorectomy (BSO).

Over a median follow up time of 5.5 years, BSO was associated with a 40% reduction in second cancers, and a 50% reduction in death from any cause. BSO was not associated with adverse outcomes (e.g. depression, heart disease or stroke) in this group of women.

The research was published in The Lancet Oncology on 8 May 2025. Professor Antonis Antoniou, the senior author of the study, remarked upon “the power of exceptional NHS datasets in driving impactful, clinically relevant research.” The work has resolved a significant area of uncertainty around existing (but previously unproven) clinical practice, and will allow women carrying BRCA1/BRCA2 variants to make more informed personal decisions.

The work was funded by Cancer Research UK, as part of a broader research programme called CanGene-CanVar, in which NDRS are key partners.

Read how NDRS data helped uncover the benefits of ovarian surgery for women with BRCA-related breast cancer.

Other news

Empowering change through collaboration: CDC April 2025 

An update following the most recent meeting of the Cancer Data Collaborative (CDC), on 24 April. The organisations represented at the meeting include Cancer Research UK, NHS England, HDRUK, AMRC, Use My Data and Patient and Public representation.  

In this meeting, the following topics were discussed: 

• the integration of NHS England into the Department of Health and Social care, and the subsequent announcement of the launch of the National Health Data Research Service. Members were encouraged to share their views of the upcoming changes and NHSE were able share how the changes may be implemented at this early stage. There was a strong emphasis on galvanising stakeholder engagement into the new service.
• updates on existing collaborations with NHSE to help speed up data access and unlock new datasets (screening data). Progress with each project is being made, with plans in place for these projects. This includes CRUK providing three members of staff for 18 months to provide additional capacity resource and support.
• how member organisations have input their views into shaping the Cancer plan.  

This meeting reflects the continued commitment of all partners to work collaboratively in shaping the future of cancer data access and use, ensuring that patient benefit remains at the heart of all developments.