NDRS Newsletter │24 November 2021
NDRS News
Each month we share the latest news from the National Disease Registration Service (NDRS) including recent publications, data releases and upcoming events. 
  
This month, NDRS released the first results from the Cancer Quality of Life survey. We also launched a new NHS England cancer staging dashboard on CancerStats2 and updated the Rapid Cancer Registration Data COVID-19 Incidence and Treatment dashboard.

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

NDRS is made up of 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
Update from NHSD on the announcement this week that the national digital organisations are to combine
Building on the huge progress made on digital transformation during the pandemic, NHS Digital and NHSX will be merging into NHS England and Improvement.
 
The decision by Health and Social Care Secretary Sajid Javid to accept the recommendations of Laura Wade-Gery, Chair of NHS Digital and a non-executive director at NHS England, was announced on Monday 22nd November. You can find out more on gov.uk.

We will bring you further updates as this progresses.
Office for Data Release (ODR)
We continue to work closely with colleagues at UKHSA to lift the pause on applications to the Office for Data Release for NDRS data, as soon as is possible and will bring you further information as soon as we can. For any enquiries please contact [email protected] in the first instance.
Data releases and publications
Data story published on the Get Data Out programme
NDRS has published a data story on the Get Data Out programme, .
 
Data stories explain how NDRS uses patient information to improve diagnosis and treatment of cancer, rare diseases and congenital anomalies. This data story was produced in collaboration with ‘use MY data’, which is an independent patient movement focused on promoting the benefits of using patient data to save lives and improve outcomes.
 
The Get Data Out programme, managed by analysts within NCRAS, publishes detailed statistics on types of cancer which only have a small number of cases each year. Until now, rarer cancers like these have often not been included in statistics.
 
This data story is part of a wider series available on the NDRS website. If you have any ideas for future data stories, let us know by emailing [email protected].
The Cancer 52 logo
First results from the Cancer Quality of Life survey released
NDRS released the first results from the Cancer Quality of Life survey, reporting survey results for breast, colorectal and prostate cancer patients invited to complete the survey between September 2020 and July 2021.

The survey is a joint project with NHS England and NHS Improvement aiming to track and respond to the long-term quality of life impact of cancer. This is the first time we’ve been able to report results from the innovative survey, following many years of development and implementation since its recommendation in the 2015 Cancer Taskforce report and the 2019 NHS long-term plan.

Patients with all types of cancers are now being invited to complete the survey. We will develop the dashboard further as more data becomes available.
An image showing different factors that make up someone's quality of life
Cancer Drugs Fund (CDF) reports published

These reports show how the SACT dataset provides essential real-world evidence to inform committee decisions.
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Paper published evaluating the Be Clear on Cancer (BCoC) national mass media campaign to raise awareness of lung cancer symptoms
The BCoC evaluation team within NDRS, working with a team at the University of Exeter, published a study evaluating the national mass media campaign to raise public awareness of possible lung cancer symptoms in England in 2016 and 2017. The study has been published in the British Journal of Cancer.
The Be Clear on Cancer logo

NHS England dashboard for cancer staging launched
NDRS are pleased to announce the launch of the NHS England Dashboard for Cancer Staging. Hosted on CancerStats2 (requires a secure HSCN connection to access), this new tool represents a collaboration between NHS England & NHS Improvement, the Cancer Alliance Data, Evaluation and Analysis Service (CADEAS), and the NDRS Data Liaison and Business Intelligence teams, enabling stakeholders to monitor providers against the new national 80% target for staging completeness.
An icon of data
Paper published on the effects of the national HPV vaccination programme in England
A study on the effects of the national HPV vaccination programme in England was published in the Lancet earlier this month. The study was a collaboration between King’s College London, National Infection Service, Immunisations and countermeasures division and NCRAS.

The results show that the HPV vaccine reduced cervical cancer by 90% especially in individuals who were offered the vaccine at age 12 to 13 years.

This study used cancer registration data from NDRS. The results are really powerful and the insights have made headlines around the world.
An image of the HPV vaccine
Further news
Feedback for the Rapid Cancer Registration Dataset (RCRD) COVID-19 dashboard
We have just finished making some drastic improvements to the RCRD COVID-19 dashboard. This is a direct result of feedback from our users, so thank you to those who got in touch. The new version will be going live with the next data release.

Your feedback is so important to us and helps us to continually improve our tools, so please take the time to complete our RCRD online survey by Friday 10th December.
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Feedback for the congenital anomaly annual statistics
We would also like to hear from you if you have ever read the congenital anomaly annual statistics report. This includes the latest 2019 statistics published in September, or any other previous editions.

Please could you complete this feedback survey by Friday 10th December.

Understanding how people use our tools is essential for us to make improvements and ensure they are as impactful as possible.
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