NDRS Newsletter │16 December 2022
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 Digital 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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Message from Sarah Stevens Associate Director NDRS
We have been in NHS Digital for 15 months and over that time have navigated and adapted to new ways of working, established new systems and processes and have quickly established positive working relationships with colleagues across the organisation. All while continue to deliver a world leading national disease registration service across cancer, congenital anomalies and rare diseases.
 
All of this has only been possible with the huge dedication, expertise and positivity of the team, in addition to strong partnerships and stakeholder engagement that continue to both champion our work and challenge us to do better.
 
A big thank you to you all for your continued support of NDRS, it is hugely valued. We hope you have a great Christmas and Happy New Year. 
Updates from NDRS
Merger into NHS England
On 22 November 2021, the previous Secretary of State for Health and Social Care set out his intention to merge Health Education England (HEE) and NHS Digital (NHSD) with NHS England (NHSE). NDRS, as a part of NHS Digital, will also move to be part of NHS England’s Transformation Directorate alongside other data and analytic functions and we can confirm that the target date to complete the transfer will be 31 January 2023, to come into force on 1 February 2023. We will bring your further updates on the merger via our newsletter in the New Year. If you have any questions please email NDRSenquiries@nhs.net
NDRS user research
Thank you to everyone who responded to our stakeholder survey last month. The information fed back will inform a wider piece of user research which we are aiming to start in the New Year. This will involve the breadth of our stakeholders to really get to grips with how the service is currently used, what is of use and value to you in your role and what aspects we might need to change or introduce to better support delivery on improving patient outcomes and saving lives. If you would like the opportunity to inform our future service or more information about this work please email sophie.newbound1@nhs.net with your details and any questions.
Update on Private Beta website
On September 8 we launched our private beta website. Thank you to everyone who has sent through their comments and feedback so far.
Below are examples of feedback we have received and the actions taken.
  • You told us it wasn’t clear we were a part of NHS Digital as a result we have added the NHS Digital logo to the top of the page and included more information about our role as a part of the NHS within the ‘About NDRS’ pages
  • You told us that acronyms and abbreviations are not clear for everyone so we are developing a glossary which will be available on the site soon.
  • You told us it is hard to navigate the scientific journal library to find what you needed. As a result we have separated the years into different pages which we hope will make it clearer.
We’d love to know if you think these have improved things and any other feedback you have is welcomed as we continue to refine the site.
Please use the form on the banner at the top of the site.
Data releases and publications
NCARDRS Congenital Anomaly Official Statistics Report for 2020 
The NCARDRS Congenital Anomaly Official Statistics Report for 2020 was released Dec 1 and can be found here: NCARDRS Congenital Anomaly Official Statistics Report, 2020 - NHS Digital This is the sixth annual congenital anomaly statistics report released by NCARDRS and the third report to contain national data for the whole of England. The report contains information on congenital anomalies detected in babies delivered between 1 January and 31 December 2020. For the first time, the report has been released as an “official statistic”.
An icon showing data
Cancer Services profiles on Fingertips 
The Cancer Services profiles, on the Fingertips platform, provide GP practice-level data on cancer screening, diagnostic testing, diagnosis pathways and cancer incidence. They are intended to support commissioners and health professionals to assess the impact of cancer on their local population and make decisions about services. The annual update of these profiles was released recently, adding data for the April 2021 to March 2022 financial year for most metrics, except for cancer incidence where data was added for the April 2020 to March 2021 financial year.
An icon showing diagnosis
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