About NDRS

The National Disease Registration Service (NDRS) is part of NHS England and manages 2 disease registration services:

• the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)
• the National Cancer Registration and Analysis Service (NCRAS) 

For these population-based registration services we collect, curate and quality-assure and analyse data from every patient in England diagnosed and/or treated with these registerable conditions.

NDRS is a vital resource that helps researchers, healthcare professionals and policy makers and many others make decisions about NHS services and the treatments people receive.

Cancer registries have been collecting and publishing population based information on cancer registration and survival for many years, some since 1947.

Originally cancer registries were regionally based, and the teams adopted names such as cancer intelligence units or cancer surveillance units to reflect changes in their roles in cancer epidemiology and research.

The importance of their work was confirmed in the expert advisory group report on cancer services in 1995, the Coleman- Hein report¹. This outlined a radical reform of the UK's cancer services with the aim of improving outcomes and reducing inequalities in NHS cancer care.

In 2013, the 8 regional cancer registries were rationalised to create a single cancer registry for England, the National Cancer Registration and Analysis Service (NCRAS).

And in 2015, a new registry was launched the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS).

Both these services were integrated to create the National Disease Registration Services (NDRS) in 2018.

NDRS transition to NHS Digital (NHSD)

In October 2021, as part of the government’s strategy to transform the public health system in England, responsibility for the management of the National Disease Registration Service transferred from Public Health England (PHE) to NHS Digital.

^1. Calman–Hine Report (1995) A Report by the Expert Advisory Group on Cancer to the Chief Medical Officers of England and Wales. A Policy Framework for Commissioning Cancer Services – The Calman–Hine Report. London: Department of Health

NHSD transition to NHS England (NHSE)

The decision by Health and Social Care Secretary Sajid Javid to accept the recommendations of Laura Wade-Gery, Chair of NHS Digital and a non-executive director at NHS England, was announced on Monday 22 November. Find out more about the Laura-Wade Gery report on the GOV.UK website. 

Building on the huge progress made on digital transformation during the pandemic, on the 1 February 2023, NHSD and NHSX merged into NHS England. NHS England is now therefore the controller for the data held by the National Disease Registration Service (NDRS). Find out more about the NHS England merger on the NHS Digital website. 

The below image shows key dates for NDRS between 2013 and 2016. Please refer to the supporting information section of this page for a full summary of the content of this image:

The below image shows key dates for NDRS between 2016 and 2021. Please refer to the supporting information section of this page for a full summary of the content of this image:

Disease registration captures a patient’s complete journey from referral, diagnosis, treatment, outcomes, experience and survival. It does this through the collation, curation and combination of many differing data sources into a unified information resource. This is what makes disease registration so important to helping us understand:

• how many people have cancer, congenital anomalies and rare diseases, and who is at risk of developing these diseases. This information supports the effective delivery NHS services.
• how and where people are diagnosed. This supports improvements to screening programmes and public health campaigns to improve early diagnosis.
• how different treatments affect patient outcomes and how treatments vary between hospitals. NDRS data is used in international benchmarking studies to compare survival rates and outcomes with other countries.

NDRS works in partnership with other organisations to learn more about these diseases and inform clinical practice and treatments. It is an integral part of NHS England work programme supporting ground breaking research such as GRAIL and MELODY.

Find out more about the NDRS work programmes and partnerships in the 'our work' section of the website.

The below image shows the logo of some of our partnership organisations:

NDRS has a significant 'business as usual' work programme that includes the production of national statistics and regular data feeds and reports to the NHS and other stakeholders.

NDRS provides robust surveillance to monitor and detect changes in health and disease in the population. NDRS is a vital resource that helps researchers, healthcare professionals and policy makers to better understand population health and disease and informs decisions about NHS services and the treatments people receive.

Find out more about NDRS outputs and publications in the 'data' section of our website. 

The National Disease Registration Service (NDRS) is part of NHS England and sits in the Transformation Directorate, responsible for driving the digital transformation of the NHS and social care.

NDRS is led by Sarah Stevens, Associate Director for Disease Registration.

The image below is of Sarah Stevens presenting at the Rare Disease UK event March 2017. 

The below infographic is an organogram of the NHS England and NDRS structure:

The NDRS Senior Leadership Team

The Senior Leadership Team (SLT) is made of the following: 

NDRS staff

The NDRS has almost 400 staff working on disease registration, quality assurance data liaison, data loading, analysis, IT and development, engagement and business management. 

The below image summaries the key NDRS teams and responsibilities. Please refer to the supporting information section of this page for a full summary of the content of this image:

The below infographic shows the flow of data from NHS provider through the NDRS registration process. Please refer to the supporting information section of this page for a full summary of the content of this image:

Find out more about how the National Disease Registration Service (NDRS) collects and records data of people with cancer, rare diseases or congenital anomalies.

The below infographic provides examples of how NDRS has used patient data and the impact of that work. Please refer to the supporting information section of this page for a full summary of the content of this image:

Find out more about our data stories that show how NDRS uses patient information to improve diagnosis and treatment of cancer, rare diseases and congenital anomalies.

View all NDRS related infographics below:

The below is an infographic shows NCARDRS key achievements to date. Please refer to the supporting information section of this page for a full summary of the content of this image:

The below is an infographic shows NCRAS key achievements to date. Please refer to the supporting information section of this page for a full summary of the content of this image:

Take a look at our ‘Data Stories’ which outline how NDRS data has been used and impacted research and clinical care. They also include a patient/public perspective.

The data is provided by patients and collected by the NHS as part of their care and support. The NDRS uses the data to help: 

• understand cancer, rare diseases, and congenital anomalies
• improve diagnosis
• plan NHS services
• improve treatment
• evaluate policy
• improve genetic counselling

The data we curate is accessed and used to support high quality clinical care, for health research and policy decision making. We work closely with clinicians, researchers, charities but also with patients and the wider public to inform some of the work that we do and how best to communicate this.

Take a look at our ‘Data Stories’ which outline how NDRS data has been used and impacted research and clinical care. They also include a patient/public perspective.

You can read more about:

• how we collect and record patient data
• how we use patient data
• how to access NDRS data

You can also see examples of how patient data has been used for research by watching our webinars.

Please use the contact the team page to submit a form with all general enquiries about cancer, rare disease and congenital anomaly registration and our work.