National Disease Registration Service

NDRS Newsletter │10 March 2023

NDRS News

Each month we share the latest news from the National Disease Registration Service (NDRS) including recent publications, data releases and upcoming events.

The National Disease Registration Service is part of NHS England and collects data from the NHS about cancer, rare diseases and congenital anomalies in England.

NDRS 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. NDRS uses this data 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

Brain, ovarian and prostate cancer awareness month

March is brain, ovarian and prostate cancer awareness month. At NDRS we wanted to use this opportunity to tell you about the detailed statistics from the Get Data Out (GDO) programme which publishes in-depth, anonymous data about cancer to support research.

Working with charities, clinicians and researchers, the GDO programme publishes data about small groups of patients according to clinically important factors and factors that affect treatment/outcomes. Visit the NDRS website to see our data story about the GDO programme.

Detailed statistics for these cancers are available on the GDO programme pages:

Any questions about the GDO programme please contact [email protected]

Data releases and publications

Reproducible Analytical Pipelines - Published code

The Reproducible Analytical Pipelines which was published last month is the code used to produce the Cancer Registration National Statistics.

Find out more

An icon showing data

National Statistics on Cancer Survival in England

On Thursday 16 Feb, we published the National Statistics on Cancer Survival in England which provides survival estimates on patients diagnosed between 2016 and 2020 by cancer, age, deprivation, gender, stage at diagnosis and geography.

Find out more

First page of the Cancer survival in England publication

Events

Upcoming Spring webinars series

We are pleased to announce we will be running our next series of lunchtime webinars, beginning on 29 March. The webinar series will consist of 6 sessions covering a range of NDRS activities, including a closer look at some of the datasets, our work on congenital anomalies and rare diseases and highlighting recent partnership projects. All sessions will be recorded and available on the NDRS website so you can watch at another time.

Please click on each link below for more information and to register for free.

A deeper dive into the SACT data set

Wednesday 29 March 1-2pm

How NDRS are working with data to reduce health inequalities

Wednesday 12 April 1-2pm

Successes and challenges for rare disease registration in relation to non-genetic rare diseases, and how data is being used to produce actionable outputs

Wednesday 26 April 1-2pm

An introduction to the national congenital anomaly data for England

Wednesday 10 May 1-2pm

Breakthroughs in sarcoma cancer data: implications for patient care

Thursday 18 May 1-2pm

Supporting Lynch syndrome diagnosis and screening using NDRS data

Wednesday 24 May 1-2pm

Any questions please contact [email protected]

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