December 2024

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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Message from Sarah Stevens, Deputy Director

As we approach the end of another remarkable year, it is important to take a moment to reflect on our collective achievements and the significant strides NDRS has made. I am proud of the commitment and focus across all of NDRS on delivery, as well as producing innovative and novel work. The dedication of the NDRS teams serves as a cornerstone for our continued success, much of which comes through our partnerships with academia, third sector organisations, and the wider health community. In addition, the ongoing support and contributions from our clinical leads and wider stakeholders has been invaluable.

Our achievements over the past 12 months include:

• winning the Government Project Delivery Innovation Award for the NDRS submission portal
• launching of our Strategic plan for 2024-27
• launching our new cancer data hub on the NDRS website improving user experience and bringing data to once place
• 9 releases of 5 official statistic publications
• delivery of 64 routine outputs, including quarterly, monthly, and weekly reports, many of these at Bronze or above level RAP
• publication of 34 peer-reviewed articles
• delivery of 5 innovative webinars as part of the spring webinar series, enhancing knowledge sharing and engagement with our stakeholders
• 63 active partnerships in place and the establishment of a new cancer data collaborative with CRUK, HDRUK, Macmillian, Cancer52 and AMRC
• supporting research and clinical trials including the NHS-Galleri Trial
• evaluation of the introduction of non-invasive prenatal testing (NIPT) as part of the Fetal Anomaly Screening Programme
• published first national rare disease prevalence reporting tool for rare conditions, including rare diseases, congenital anomalies and cancers

As we look forward to the coming year, I am confident that we will continue to build on these successes. We are committed to driving improvements in population health and patient outcomes, delivering high quality data and analysis enabling and providing expert, timely insight and evidence. 

Thank you for the hard work and dedication. Together, we are making a real difference.

Best wishes for a happy and healthy new year.

Data releases and tools

Cancer Quality of Life survey dashboard updated

On 11 December 2024, the Cancer Quality of Life survey dashboard was updated with data from an additional 68,005 responders. A new front page feature now allows users to toggle between the latest full calendar year of data and all survey data combined. The updated dashboard includes data from 593,558 people invited from September 2020 to September 2024, with responses received up to 11 November 2024.

Public release of 30-day mortality post-Systemic Anti-Cancer Therapy (SACT) Case-Mix Adjusted Rates (CMAR) report 

We are pleased to announce that the latest 30-day mortality post-SACT Case-Mix Adjusted Rates (CMAR) reports are now publicly available on the National Disease Registration Service (NDRS) website. Please click ‘open dashboard’ via the link to access the reports. The latest release covers: 

• patients diagnosed with bowel cancer who received SACT treatment between 2021 and 2022
• patients diagnosed with head and neck cancer who received SACT treatment between 2019 and 2022

The CMAR analysis takes into account the wide variety of patients receiving treatment within each NHS trust and produces adjusted 30-day mortality rates to enable comparison between NHS trusts. This includes differences in gender (cancer type-dependent), age, deprivation, ethnicity, performance status, and co-morbidity score of patients within each NHS trust.

The reports were initially shared with NHS trusts in England in November. NHS trusts had three weeks to review the reports, request patient data if required, and provide a comment to be displayed alongside the report on the website, should they wish to do so.

Please contact the Helpdesk with any questions.

HPV vaccination and screening policies lead to significant drop in cervical cancer rates in England

A paper was recently published on the association between HPV vaccination and cervical screening policy changes and cervical cancer incidence and grade-3 cervical intraepithelial neoplasia incidence in England, 2006–2020: a population-based trends analysis.

The study looked at variations in the rates of cervical cancer and grade-3 cervical intraepithelial neoplasia (CIN3) between 2006 – 2020 in England and related them to predictions based on the changes in HPV vaccination and cervical screening policy. The study underscores the importance of data visualisation as a tool for monitoring the impact of public health interventions. The results showed substantial reductions in CIN3s and cervical cancers in cohorts that were offered HPV vaccination.