NDRS Newsletter 17 December 2021
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 new statistics as part of our Get Data Out programme. We also updated the Rapid Cancer Registration data to include diagnoses up to August 2021 and uploaded the Sarcoma Level 3 dashboard onto CancerStats2, which requires a secure HSCN network to access.

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
Merry Christmas from NDRS!
Wishing you all a very Merry Christmas and a Happy New Year. We hope you stay safe over the festive season, and thank you for your continued support and involvement with our work.
Office for Data Release (ODR)
The pause on access to NDRS data was lifted on 6th December. In the interim the data release service for access to NDRS data is being provided by the Office for Data Release in the UK Health Security Agency. NHS Digital is working to streamline its data release services for future provision. For more information about accessing NDRS data please read the full details here.
Data releases and publications
New statistics released from the Get Data Out (GDO) programme
The Get Data Out (GDO) programme has released new detailed statistics updating the incidence data for all 13 current GDO cancer sites to cover 2013 to 2019 and adding a new GDO cancer site, eye cancer. The data is available in an open format for anyone to access and use. You can find the data in the usual place on the GDO website.
2019 data tree for Bladder, Uretha, Renal Pelvis and Ureter cancer statistics
Updates to Rapid Cancer Registration Data
Over recent months, improvements have been made to the Rapid Cancer Registration Data (RCRD) methods so that RCRD better estimates the number of new cancer diagnoses, to be closer to the gold-standard cancer registration data. The data is published in two RCRD COVID-19 Incidence and Treatment dashboards which are updated monthly, with the latest release (CAS2111) including diagnoses up to August 2021. Recent releases of the dashboards have included some additional, more detailed, cancer groupings and a revised layout of the CancerStats2 dashboard to resolve the slow performance issues experienced with previous versions. The dashboards are available at: CancerData and CancerStats2 (requires a secure HSCN connection to access).
A graph showing new cancer diagnoses in England from January 2019 to August 2021 from RCRD
Sarcoma Level 3 dashboard published on CancerStats2
The sarcoma level 3 dashboard is now available on CancerStats2 (requires a secure HSCN network to access). The dashboard allows stakeholders to see key indicators and treatment data by Cancer Alliances and 3 of the overarching sarcoma groups (bone, soft tissue and GIST). The data can be further analysed by anatomical sites – 11 groups for soft tissue and 6 groups for bone and by morphological groups. This dashboard is work in progress and will be updated frequently.
An icon of sarcoma

Treatment app updated on CancerData
The treatment app on CancerData has been updated to include cancer diagnoses up to and including 2018. Compared to the previous version of the app additional cancer sites have been defined for brain (malignant and non-malignant), endocrine (benign and non-benign), and skin (melanoma and non-melanoma) cancers.
Graphs showing the treatment breakdown from 2013 to 2018
Quarterly data for the Emergency Presentations of Cancer dashboard released
Quarterly data for the Emergency Presentations of Cancer dashboard was released at the start of the month. This indicator, covering the period from January to March 2021, estimates the proportion of all malignant cancers where patients first presented as an emergency. This is presented at Clinical Commissioning Group (CCG), Cancer Alliance (CA) and England level, and by site for England. This work is also accompanied by an app on CancerData.
An icon of data

Paper published on regional variations in hepatocellular carcinoma incidence routes to diagnosis, treatment and survival in England
A paper was published on regional variations in hepatocellular carcinoma incidence, routes to diagnosis, treatment and survival in England as part of the Hepatocellular Carcinoma (HCC) partnership with the organisation HCC-UK and the British Association for the Study of the Liver (BASL). The paper demonstrates clear differences in HCC incidence, management and survival across England. It highlights socioeconomic-associated variation and the need for improvement in early diagnosis and curative treatment of HCC.
A graph showing HCC incidence by Cancer Alliance
Cancer Services profile updated
The 2021 annual update of the Cancer Services profile went live in the Fingertips tool at the start of the month. The indicators provide information on demographics, cancer screening, incidence, Two-Week Wait referrals, diagnostic services, emergency presentations and admissions by GP practice, Primary Care Network (PCN), Cancer Commissioning Group (CCG) and at national level.
A snapshot of the Cancer Services profile
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