February 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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Updates from NDRS

Rare Disease Day

Today, 28 February 2025, is Rare Disease Day. The day marks an opportunity to raise awareness of the more than 7,000 rare conditions affecting people every day. With more than 3.5 million people in the UK living with a rare disease, the NHS is working to provide the most effective diagnosis, treatment and services for patients with rare conditions. 

NDRS manages a comprehensive rare disease registration service that collects and quality assures data about people with rare diseases across the whole of England. Today NDRS is launching a new Rare Disease Data Set to support clinical teams with the collection of vital rare disease data.

Today, NDRS also released the second rare conditions registration statistics, which use both incidence and survival, to count the number of people living with and beyond the diagnosis of a disease or condition at a fixed point in time in England. Understanding the size of this population can support service planning for the delivery of local health and social care services, quantify the ‘burden’ of disease or number of children living with a rare disease in an area or population. NDRS is committed to providing information to support service planning and treatment improvements for people with a rare disease in England, and will update the Rare Conditions Registration Statistics annually, updating previous year calculations and including additional conditions.

The England Rare Disease Action Plan 2025

The 2021 UK Rare Disease Framework outlines the UK government priorities for improving care for people living with rare conditions over the next five years:

• helping patients get a final diagnosis faster
• increasing awareness of rare diseases among healthcare professionals
• better coordination of care
• improving access to specialist care, treatments and drugs

To complement the framework, setting out how the Department of Health and Social Care and delivery partners will implement the UK Rare Diseases Framework and achieve the aims, each of the four UK nations has developed action plans, detailing how these priorities will be addressed. The fourth England rare disease action plan was published today. This update outlines some new actions and provides updates on the previous action plans. NDRS is an important Action Plan delivery partner. 

You can read more about the UK Rare Diseases Framework on GOV.UK.

You can read more about the England Rare Disease Action Plan on GOV.UK

NDRS Publication library

On 4 February, we joined the global community in recognising World Cancer Awareness Day. This important day serves as a reminder of the ongoing efforts to combat cancer and support those affected by it.

In line with our commitment to using data to advance cancer research and awareness, we are pleased to announce the creation of a new searchable table in our publication library. This easy access and interactive tool contains journal publications from 2018 to 2024 relating directly to NDRS work or including contributions from NDRS team members.

We invite you to explore our publication library and discover the valuable insights and findings that contribute to the fight against cancer.

Explore the publication library

Data releases and tools

Updates to the public systemic anti-cancer therapy (SACT) data set and radiotherapy data set (RTDS) activity

On Thursday 30 January we updated the SACT activity dashboard and Radiotherapy dose and fractionation dashboard with more recent data.

The SACT dashboard reports SACT data from all NHS trusts in England who deliver these treatments. The dashboard presents a count of systemic anti-cancer therapy activity by patients, regimens and drug administrations from January 2019 and can be viewed at England, Cancer Alliance, and Integrated Care Board level and now reports on SACT administered up to March 2024.

The RTDS dashboard reports radiotherapy data from all NHS radiotherapy centres. The dashboard presents a count of radiotherapy activity from January 2019 and can be viewed at England, Cancer Alliance, and Integrated Care Board level and includes radiotherapy administered up to October 2024. 

Both dashboards allow data breakdowns on tumour and treatment characteristics as well as patient demographics. 

Please contact the Helpdesk if you have any questions or feedback

Updates to the SACT time to first treatment dashboard on the public-facing NDRS website

In August 2023, we published a dashboard which reports the time taken for patients to be treated with SACT drugs once they have been approved by the National Institute of Health and Care Excellence (NICE) for routine commissioning in the NHS. Since its publication, the dashboard has been updated monthly with the latest available NHS trust data to include a total of 90 indications from the NICE Cancer Drugs Fund (CDF) list.

We are pleased to announce that the public-facing Time To First Treatment (TTFT) dashboard has been expanded to include results at trust and cancer alliance level alongside the existing summary measure for England. This level of detail was previously only available on the CancerStats2 (CS2) platform. Moving forward, the public-facing TTFT dashboard will be updated annually and the CS2 dashboard will be archived. This has been implemented so the TTFT dashboard is hosted on one platform space, and to make the trust and cancer alliance results by time to first treatment available in the public domain.

We would be delighted to hear your thoughts on the public-facing TTFT dashboard so please do send any feedback or questions you have to [email protected]

CancerData Hub Now Live

We are pleased to announce that the CancerData Hub is now live! The old CancerData website has been decommissioned, and all content has been successfully migrated to the new NDRS website.

As per our previous communications, the CancerData website was decommissioned in December. For those looking for specific information that was previously available on the old CancerData website, it has been archived as of November 2024 and can be accessed via the National Archive website.