February 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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NDRS News

Rare Disease Day 2026

The National Congenital Conditions and Rare Disease Registration Service (NCARDRS), part of the National Disease Registration Service (NDRS), is a comprehensive registration service that collects, curates, quality assures and analyses data about individuals identified with congenital conditions and rare diseases across England. It is one of the largest active rare disease registration services in the world. 

Rare diseases affect a small number of people, which means they can be difficult to diagnose, treat or prevent. A disease is considered rare when it affects fewer than one person in 2,000. But collectively, rare diseases are not rare as one in 17 people will be affected by a rare disease at some point in their life. This is equal to about 3.5 million people in the UK.

Saturday 28 February 2026, is Rare Disease Day, an international campaign to raise awareness of rare conditions and the impact they have on individuals and families. 

The Rare Disease Day 2026 website gives useful information and ideas about how we can all raise awareness of Rare Disease Day, including resources that can be used and details about events taking place across the world. We encourage you to get involved and share your stories.

To receive updates about NDRS work on rare diseases, you can sign up to receive our bulletin.

National Cancer Plan for England published

The Government published the new National Cancer Plan for England on World Cancer Day 2026 (4 February). This landmark strategy sets out the government’s commitment to improve cancer survival, early diagnosis and patient experience by 2035.

The plan embeds the three shifts - from hospital to community, analogue to digital and sickness to prevention - and new care model from the 10-Year Health Plan into cancer pathways.

NDRS worked closely with other data and analytics teams in NHSE, alongside colleagues in the Department of Health and Social Care, cancer charities, clinicians and patient representatives to support the development of the contents of the plan. Our particular focus was on cancer data, analysis and intelligence, and the technical annex. Existing outputs, bespoke analysis and our data releases to international consortia provided robust evidence for the plan and allowed benchmarking comparisons to be made.

We are expected to play a leading role in delivery, particularly on providing national cancer data and intelligence to track progress, drive improvement and demonstrate impact for patients.

Data releases and tools

Systemic Anti-Cancer Therapy (SACT) Activity and Radiotherapy Dose and Fractionation Official Statistics Dashboards updated

On Thursday 29 January we published updates to two Official Statistics dashboards, the SACT Activity dashboard and the Radiotherapy Dose and Fractionation dashboard. Both dashboards have been refreshed with the latest data available, reporting on SACT and radiotherapy activity up to April 2025.

Virtual Cardio-Oncology Research Initiative (VICORI) research published in The Lancet

The VICORI partnership recently published a paper titled 'Prediction of mortality, bleeding, and ischaemic events in patients with cancer and acute coronary syndrome: a model development and validation study’ in the world’s leading medical journal, The Lancet. The group applied AI to develop a cancer-specific risk prediction tool for patients with acute coronary syndrome: the ONCO-ACS score. Integrating traditional cardiovascular and cancer-related risk factors the new model predicts mortality, major bleeding, and ischaemic events – helping clinicians balance treatment benefits and risks. The team hopes the ONCO-ACS score will soon be integrated into clinical practice to support decisions on catheter-based treatment, antiplatelet therapy, and adaptations in cancer treatment.
The Lancet has also published an editorial commentary discussing the broader clinical relevance of the ONCO‑ACS score and its role in shaping future cardio‑oncology care.