National Disease Registration Service

Working with data to improve patient experiences, outcomes and save lives. As an NHS organisation, we collect patient data on cancer, congenital anomalies and rare diseases, and provides expert, timely analysis to support clinical teams, academics, charities and policy makers to help plan and improve treatments and healthcare in England.

Key features

About NDRS

Find out more about the National Disease Registration Service (NDRS) and our work on cancer, congenital anomalies and rare diseases.

NDRS spring webinar series

The National Disease Registration Service (NDRS) will be running a spring webinar series starting in March, with the aim to help navigate our information, resources and outputs more effectively.

NDRS user research plan

Explore the outcome and recommendations of the National Disease Registration Service (NDRS) user need research project.

Screenshot of award announcement summary

NDRS wins award

The National Disease Registration Service (NDRS) wins the Government Project Delivery Innovation Award 2024.

Information for patients and families

Do I need to register?

Find out if patients need to register their details with the National Disease Registration Service (NDRS).

Genetic enquiries

Discover how the National Disease Registration Service (NDRS) supports NHS clinical genetics services by offering a service to check cancer diagnoses within families.

Opting out of disease registration

Find out how to request for your data to be removed from the National Disease Registration Service (NDRS) registers.

Cancer quality of life survey

The cancer Quality of Life (QOL) is national survey run by NHS England, aimed at finding out how quality of life may have changed for people diagnosed with cancer.

Latest data outputs and publications

Screenshot of congenital anomalies 2020 report graph

Congenital anomalies annual reports

View all annual reports released by the National Congenital Anomalies and Rare Diseases Registration Service (NCARDRS) containing information on congenital anomalies detected in babies delivered between 2015 - 2021.

Example of routes to diagnosis dashboard

Get Data Out (GDO) data release

Get Data Out have released new data on treatment and survival for all 18 current cancer sites for diagnoses in 2013-2020. This is also the first release of incidence, treatment, and survival data for the new site 'Lung, mesothelioma, and other thoracic'.

Example of the dose and fractionation dashboard

RTDS dose and fractionation

Explore radiotherapy dose and fractionation in hospitals in England from the Radiotherapy Data Set (RTDS).

Somatic molecular dashboard

Explore this new tool that contains information on tumours tested for somatic aberrations (that is genetic alterations giving rise to and occurring in cancers) by year, tumour site, gene/ chromosome tested and results.

Collecting and recording patient data

Access to NDRS data

Discover more about requesting access to the National Disease Registration Service (NDRS) data.

Clinical data sets

National Disease Registration Service (NDRS) works to understand what information is required for the delivery of NHS services; to improve data quality and timeliness; and to link datasets together and make them available to improve outcomes.

Example of woman using an interactive map on a large screen

Data tools and platforms

Discover what National Disease Registration Service (NDRS) data tools and platforms are available.

NDRS Data stories

Data stories show how the National Disease Registration Service (NDRS) uses patient information to improve diagnosis and treatment of cancer, rare diseases and congenital anomalies.

PUBLIC BETA