NDRS Newsletter │10 February 2023
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 England 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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Updates from NDRS
Merger into NHS England
As of February 1 NDRS merged with NHS England. 

We are now a part of the Data & Analytics function in the Transformation Directorate. There is an ongoing change programme to create the new NHS England and we will share any further updates with you in future newsletters. You can find more information here.
World Cancer day 4 Feb 2023
Last saturday was world cancer day and an opportunity to raise awareness of some of our work on cancer in the last year.

NDRS provides an essential role in supporting cancer research. We collect patient data from NHS clinical teams in England which is then used by clinicians, charities and academics to carry out research and improve cancer diagnosis and treatment.

Did you know NDRS has led or contributed to a number of academic publications? We have added all our 2022 academic publications to our scientific journal library. The library includes publications by the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS).

In October the NCRAS team publishing the National Statistics on Cancer Registration Statistics in England. This publication reports on newly diagnosed cancers registered in England in addition to cancer deaths registered in England during 2020. For the first time, this publication included cancer mortality by deprivation and cancer site. Cancer incidence rates were published by gender, age group, geographic region, deprivation and stage at diagnosis for selected cancer sites, and cancer mortality rates by gender, deprivation and age group.
Data releases and publications
The National Prostate Cancer Audit (NPCA) Annual Report 2022
The National Prostate Cancer Audit (NPCA) Annual Report 2022 was published on 12 January and is available for download on their website. The report covers men diagnosed or treated between 1 April 2020 and 31 March 2021 in England and Wales. It looks at whether the care these men received is consistent with recommended practice and provides information and resources to support healthcare providers, commissioners and regulators to improve care, including:
Data quality and completeness, Patient demographics, Diagnosis, staging and treatment information, Treatment outcomes, Variation in treatment, and Impact of COVID-19.
The National Cancer Registration and Analysis Service (NCRAS) are data collection partner for the English data, providing the Rapid Cancer Registration Dataset (RCRD).
An icon showing urology
Soft tissue sarcoma publication
A team from NDRS, Sheffield Teaching Hospitals NHS Foundation Trust and the Cancer Institute at University College London published the incidence and net survival for all subtypes of soft tissue sarcomas diagnosed in England between 2013 and 2017. This is the first-time incidence and net survival has been published for subtypes of soft tissue sarcoma and can be used for service provision, benchmarking and addressing inequalities. Analyses of the influence of age, gender, diagnostic routes and socioeconomic deprivation are also presented in the paper. 
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Paper published by RECORDER partnership
Kawasaki disease is a self-limiting vasculitis that predominantly affects children <5 years and rarely affects adults. It is associated with significant morbidity and the development of coronary artery aneurysms. As part of the RECORDER collaboration, Dr Myron Odingo led an epidemiological study on Kawasaki disease using Hospital Episode Statistics data. The incidence of Kawasaki disease using hospital admissions data for England 2006-2021 was published by the Rheumatology Journal (OUP).
An icon showing data
RCRD COVID-19 Incidence and Treatment dashboards
We released an update of the Rapid Cancer Registration Data (RCRD) Covid-19 Incidence and Treatment dashboards to use the latest available data (CAS2301), including diagnoses up to September 2022. The dashboards are available at: CancerStats2 and CancerData. 
An icon showing the Covid-19 virus
SACT and RTDS COVID-19 dashboards
The SACT and RTDS COVID-19 CancerData dashboards have been updated to use the latest data available (CAS2301), including SACT activity up to June 2022 and RTDS activity up to September 2022. 
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Events
Upcoming Spring webinars series
We are pleased to announce we will be running our next series of lunchtime webinars, beginning on 15 March. The webinar series will consist of 6 sessions covering a range of NDRS activities, including a closer look at some of the datasets, our work on congenital anomalies and rare diseases and highlighting recent partnership projects. All sessions will be recorded and available on the NDRS website so you can watch at another time.
 
For the first three webinars, please click on each link below for more information and to register for free.
 
Wednesday 15 March 1-2pm
 
Wednesday 29 March 1-2pm
 
Wednesday 12 April 1-2pm
 
The following three webinars will cover work on sarcoma, hereditary cancers, and rare diseases and we will share details on how to register soon. 
 
Any questions please contact NDRSenquiries@nhs.net
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