July 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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NDRS updates

World-first National Inherited Cancer Predisposition Registry Goes Live – A Major Milestone for Cancer Prevention and Early Detection

On 30 June, NDRS successfully launched the NHS National Inherited Cancer Predisposition Registry (NICPR) – marking a major transformative step from treatment to prevention, as set out in the 10 Year Health Plan. To our knowledge, this is the first national, real-time registry in the world for inherited cancer syndromes – systematically capturing genomic and clinical data for people at increased risk of cancer due to inherited genetic variants such as Lynch syndrome, BRCA1/2, Li-Fraumeni syndrome, and others. Data on all inherited cancer syndromes currently tested in the NHS (~120 genes) is included.

The NHS NICPR will:

• link genomic and clinical data within NDRS infrastructure, which includes the National Cancer Registration Dataset
• enable proactive, targeted prevention and earlier diagnosis for individuals and their families – referring patients directly into national screening programmes where these exist, e.g. Lynch and Bowel Screening
• support service planning, equity monitoring, and research into inherited cancer risks
• underpin the cancer prevention agenda as laid out in the 10-Year Health Plan

The NICPR was an NHS England commitment in the UK Rare Disease Framework Action Plan for England and has been delivered by NDRS in close collaboration with the UK Cancer Genetics Group and the NHS Clinical Genetics Services in England.

Data releases and tools

Cancer Quality of Life Survey data dashboard updated 

The Cancer Quality of Life Survey data dashboard has been updated to include data from an additional 29,897 responses. The updated dashboard now includes data from 686,240 people invited up until March 2025, and responses received up to 11 May 2025. This release includes:

• more data at regional levels, including Integrated Care Boards and Cancer Alliances, for 14 broad cancer types and 17 more detailed cancer types

• this data can be further broken down by patient factors including age at diagnosis, gender, ethnic group, deprivation and stage at diagnosis

NDRS User Research Opportunities

We are always looking for opportunities to embed user led approaches in our work and to continually assess and improve the service based on user feedback. Find out more about the NDRS User-Centred Design (UCD) principles on our website.

If you would be interested in supporting us by providing feedback on our outputs, please complete the online registration form below. You can decide which projects you would like to engage with and you can opt-out at any time.

We are currently asking for feedback on our Cancer Registration Statistics outputs via a short online questionnaire, helping us to understand what is working well and where we can make things better. If you are interested in taking part please complete this in addition to signing up to the NDRS user research register.

Correction notice

In our June edition of the NDRS newsletter, we incorrectly stated that Professor Rankin was recently announced by NIHR as a Senior Investigator in its new Challenge Maternity Disparities Consortium. The correct information is that Professor Rankin was appointed as co-lead for Research and Capacity Development for the NIHR Maternity Disparities Consortium.

We apologise for the error.

Newsletter is taking a break in August

The newsletter will be taking a break in August and will return in September. We wish you all a good summer.