NDRS Newsletter 19 September 2019
Welcome to the first NDRS newsletter
Each month we will share the latest news from the National Disease Registration Service (NDRS) including new data releases, publications and events. In this month's update we share the highlights from our year so far, including the details of the most recent incidence and survival statistics, news of our cancer data conference next year, and an update about our molecular programme.

The National Disease Registration Service is part of Public Health England and collects data from the NHS about cancer, rare diseases and congenital anomalies in England.
It is made up of the   National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Diseases Registration Service  (NCARDRS). The NDRS uses data to detect changes in the health of the population and help the NHS improve the diagnosis and treatment of these diseases.

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Data releases and publications
Cancer incidence for diagnoses in 2017
In the spring we released the latest data on cancer diagnoses in 2017   in partnership with the Office for National Statistics. The data shows that diagnoses of cancer are increasing. The report includes new interactive infographics showing incidence by cancer type and geographical region. 
Latest cancer survival statistics
In August we published the latest cancer survival statistics in partnership with the Office for National Statistics. We published 1-year, 5-year and 10-year net survival estimates for adults and children diagnosed with cancer between 2013 and 2017 and followed up to 2018, and by stage at diagnosis.
Emergency presentations of cancer
We continue to publish quarterly data about the estimated proportion of cancers where patients first presented as an emergency . The most recent publication includes data up to December 2018. The statistics show a continuing decline in the proportion of cancers diagnosed as an emergency presentation. The data is available by CCG and Cancer Alliance.
New prostate cance r data released
In July, we released new data on the incidence and treatment of prostate cancers . This data comes from the 'Get Data Out' programme in NCRAS which publishes routine open data about small groups of cancers. The programme provides data on incidence, survival, treatment and routes to diagnosis about small and clinically relevant groups of cancer patients. Other available data includes statistics on brain, ovarian, testicular, and pancreatic tumours.
Congenital anomalies statistics
We have published the latest statistics about congenital anomalies in England in 2017 . This report is a resource for clinicians, commissioners and providers of healthcare for the diagnosis and management of infants with congenital anomalies. It also provides high quality data for researchers and those seeking detailed information about congenital anomaly prevalence in England.
New prevalence data on Spinal Muscular Atrophy Type 1 (SMA1)
We released national data on the prevalence of spinal muscular atrophy type 1 (SMA1) for England. This data briefing is the first of its kind for a rare disease. It is based on patient data held securely by us in NCARDRS and linked to hospital data from the NHS and mortality data from the Office for National Statistics.
Raising awareness of cancer registration
We continue to raise awareness of cancer registration and the individual’s right to opt-out. We have refreshed our information materials with the involvement of patients, the public and healthcare professionals. We are working closely with NHS trusts to understand how to support them to ensure newly diagnosed patients are informed about cancer registration at an appropriate time.

This year we established an advisory group to advise and challenge us on our work to deliver on the recommendations of the Review of Informed Choice for Cancer Registration . More recently we have partnered with Teenage Cancer Trust and young people to develop a new leaflet for young adults and teenagers. For more information please contact the Engagement and Awareness team.
Cancer data stories explain how data is improving cancer care
We have published three cancer data stories   and two blog s ( here and here) to show how patient information is used to research and better understand cancer. These stories aim to inform readers how patient information is essential to driving improvements in treatment and care, and to create greater transparency about our work in NCRAS. The stories received positive feedback from the National Data Guardian. We will publish more stories in the coming months. 
NCRAS conference returns in 2020
We are delighted to announce the Cancer Data Conference (previously the Cancer Data, Outcomes and Services Conference) will be back in 2020. We will annouce the dates and venue in our next newsletter.

We have been working hard, with the involvement of many of our stakeholders, to make next year's conference even better. Find out how here.
Developments in data for rare and less common cancers
In May we hosted a one-day event in collaboration with Cancer52 which showcased how data for rare and less common cancers is collected, analsyed and used. Visit the event page for the video and report.
Other news
Developments in genomics and molecular data
Molecular and genomic data are revolutionising disease registration. In the NDRS, we currently collect cytogenetic data on all congenital anomalies, somatic molecular data for tumour profiling and precision medicine, and germline molecular data for hereditary cancer predisposition syndromes (with NCRAS leading and coordinating the national contribution to the BRCA Challenge). 

In January this year, we launched a new online system for genetic requests, a cancer family history confirmation service provided to Clinical Genetics professionals in the NHS. In the first 6 months we have processed over 12,000 individual requests all within our 10-day turnaround time target.

We are continuing to develop our molecular programme and have recently collected molecular data on rare disease patients for the first time. We are also improving cancer registrations to routinely record biomarker status from pathology feeds, including mismatch repair status (a recommended screening test for Lynch syndrome ).

For more information on the NDRS molecular programme, please contact Steven Hardy, Head of Molecular and Diagnostics.
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