July 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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Data releases and publications

Cancer Treatments dashboards update

The Cancer Treatments dashboards have been updated for 2013 - 2021 diagnoses. This tool presents treatment data for patients who have received chemotherapy, radiotherapy and surgical tumour resections in England by cancer site, year of diagnosis, stage at diagnosis, age, gender, socio-economic deprivation, ethnicity, and comorbidity at diagnosis, and by Cancer Alliance.

For the first time, treatment rates have been updated to include the additional sites: anal cancers, liver and biliary tract subsites, and haematological malignancy subsites. Please note surgical treatments have not yet been defined for haematological malignancies. The updated Standard Operating Procedure (SOP) can be found on the NDRS website and provides more detailed information and the code is available on the public GitHub page.

Report analysing cancer waits published

The Cancer Research UK (CRUK) and NDRS partnership has released a report analysing patients waiting over 104 days from urgent suspected cancer referral to starting cancer treatment. The analysis used the Cancer Waiting Times dataset and Rapid Cancer Registration Dataset to look at the characteristics associated with these patients and the reported reasons for the delay.

Main findings of the analysis included:

• patients starting treatment in April to September 2022 were over 3 times as likely to have waited over 104 days from referral, compared to those in 2017 - 2018;
• patients living in the most deprived areas were a third more likely to have waited over 104 days compared to those in the least deprived areas and
• healthcare provider-initiated delay was the most common reason for delay between referral and treatment for patients who waited over 104 days to start treatment in April to September 2022.

The full report can be accessed on this CRUK page.

Urgent suspected Cancer referrals dashboard

The latest version of the Urgent suspected cancer referrals dashboard, which reports referral, conversion and detection rates by combinations of cancer site, geographies and demographics now includes referral data up to 2023. The update also provides breakdowns by 5-year age-groups, where possible, and newer geographies.

Sarcoma cancer awareness month

As July is Sarcoma awareness month we wanted to use this opportunity to tell you about the Get Data Out (GDO) programme which publishes in-depth, anonymous data about cancers such as sarcomas, to support research. 

The Get Data Out tool is a fantastic platform for patients, charities and researchers to gain access to national statistics and better understand how key prognostic indicators such as age, routes to diagnosis and stage can affect patient outcomes. You can visually explore counts for these diseases according to 24 broad morphological subtypes for bone and soft tissue sarcomas and you can download an excel document which has in-depth stats on incidence, treatment, routes to diagnosis, and survival.

Events and webinars

Spring webinar series 

Our series of lunchtime webinars began on 26 March. All sessions are recorded and previous webinars are now available on the NDRS website. 

The aim of the webinar series is:

• to help you navigate our information, resources and outputs more efficiently
• to support knowledge transfer and improve understanding of the methodologies or processes behind our work

• to provide an more in-depth look at some of our new data releases and resources

The last webinar of the series is Using SACT and Radiotherapy outputs to support improved patient care in England on Thursday 5 September 12-1pm

Click here to register for the event.

Newsletter is taking a break in August

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

Additional useful resources

Please see some of our useful resources below: