NDRS Newsletter │22 July 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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Updates from NDRS
Sarcoma Awareness month
July is sarcoma cancer awareness month. At NDRS we wanted to use this opportunity to tell you about the Get Data Out (GDO) programme which publishes in-depth, anonymous data about cancer to support research.
 
Working with charities, clinicians and researchers, the Get Data Out programme publishes data about small groups of patients according to clinically important factors and factors that affect treatment/outcomes. You can visually explore counts for these diseases according to 24 broad morphological subtypes for bone and soft tissue sarcomas and/or you can download an excel document which has in-depth stats on incidence and outcomes according to Kaplan-Meier survival and net survival.

The Get Data Out website 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.
Meet the SACT team in NDRS
The Systemic Anti-Cancer Therapy (SACT) data team, a part of the Data Projects team in NDRS.

We have worked in partnership with NHS England since 2016 to collect, curate, analyse and report high quality and timely SACT data to help clinicians and commissioners monitor cancer care and patient outcomes.

A key objective is to provide analytical reports to support the work of the Cancer Drugs Fund (CDF) which provides patients with earlier, time-limited access to promising new cancer medicines where there is uncertainty as to their clinical effectiveness.

Our work directly impacts on patient care and outcomes; to date 43,247 patients have benefitted from drugs in the CDF for which the SACT team have provided supporting data.

  • The SACT Helpdesk and Business Intelligence team support data providers with uploads, dataset information, and support internal IT application users. The team also monitors quality and completeness of SACT data submitted by NHS trusts
  • Our Data Liaison Officers and Project Managers support trusts to improve their SACT data quality and completeness, and follow up any missing CDF patients in their submissions
  • Our team of Cancer Analysts develop methodologies for CDF analysis which focus on patient characteristics, treatment patterns and outcomes including overall survival and treatment duration

This teamwork results in real-world evidence reports which help NICE decide which CDF drugs will be available for routine commissioning in the NHS.

For more information, the latest outputs and details of how to get in touch please visit the SACT website
Data releases and publications
Rapid Cancer Registration Data (RCRD) COVID-19 Incidence and Treatment dashboards
We continue to update the two Rapid Cancer Registration Data (RCRD) COVID-19 Incidence and Treatment dashboards. The latest monthly update included diagnoses up to March 2022 and treatment data until at least December 2021. The dashboards are available at: CancerData (publicly available) and CancerStats2 (requires a secure HSCN connection to access).
An icon showing data
Emergency Presentations of Cancer: Quarterly Data, Q1 to Q3 2021/22 (Apr to Dec 2021) report released
The Emergency Presentations of Cancer: Quarterly Data, Q1 to Q3 2021/22 (Apr to Dec 2021) report and data tables were published on 7 July. An interactive tool on CancerData is also available.
 
This release summarises the estimated proportion of all malignant cancers where patients first presented as an emergency. This latest publication has been updated to include quarterly data for April to June 2021, July to September 2021 and October to December 2021 (quarters 1, 2, and 3 of financial year 2021 to 2022) and an update of the one-year rolling proportion. The main message from the report is that the proportion of new cancer patients presenting as an emergency presentation has almost returned to pre-COVID levels.
An icon showing diagnosis
Projects
The International Benchmarking of Childhood Cancer Survival by Stage (BENCHISTA) project
BENCHISTA is a research collaboration between multiple population-based cancer registries within and outside of Europe looking to understand why there are variations in childhood cancer survival rates between countries and to highlight any areas that require improvement. NDRS alongside more than 60 other population-based cancer registries will collect information on six childhood solid tumours: medulloblastoma, osteosarcoma, Ewing sarcoma, rhabdomyosarcoma, neuroblastoma, and Wilms Tumours, diagnosed between 2014-2017.
 
The BENCHISTA project is funded by Children with Cancer UK and the sponsor is University College London (UCL). The project has ethical approval under UCL and the Fondazione IRCCS Istituto Nazionale dei Tumori (INT).
 
Research questions
  1. Are childhood cancers diagnosed at a more advanced stage in some countries compared to others?
  2. Do survival rates by tumour stage vary between countries/large geographic regions? Referring to differences in diagnostic and treatment practices or in the tumour biology.
  3. What are the different pathways of care for children in different countries and are there any potential opportunities for early diagnosis of the 6 childhood solid tumours? 

Transparency and data sharing
The Data Transfer Agreement for this study was approved by NHS Digital during the transition period of the National Disease Registration Service to NHS Digital. Therefore this data approval could not go through the routine Data Access Request Service (DARS) at that time and has been released under exceptional circumstances. 
 
More information
Newsletter is taking a break in August
The newsletter will be taking a break in August and will return in early September. Wishing you all a good summer.
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