NDRS Newsletter 19 March 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 celebrate a few 'firsts' - the first ever report combining the analysis of data for children, teenagers and young adults, and the first release worldwide of national variant data for germline genetic tests on individuals. We are also asking you to participate in a short survey to help us plan future virtual events and activities.

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
Children, Teenagers and Young Adults (CTYA) UK cancer statistics report published
This month, NDRS published the children, teenagers and young adults (CTYA) UK cancer statistics report. This is the first UK-wide report on cancers in children to be published in almost a decade, and the first ever combining the analysis of data throughout the CTYA age spectrum. The report combines data on cancer incidence, survival and mortality from cancer registries in the four UK countries.

An accompanying blog post has also been published on Public Health Matters.
First release of national variant data for germline genetic tests on individuals
NDRS' Molecular and Genomics Team have released national data for germline variants in mismatch repair (MMR) and other genes predisposing to colorectal cancer. Bowel Cancer UK initially funded this work in collaboration with Newcastle University, and Cancer Research UK are now involved as part of the CanGene-CanVar programme. Data from 19,220 people with a personal or family history of colorectal cancer was released to the Cancer Variant Interpretation Group UK (CanVIG-UK). NDRS data is vital for identifying which genomic variants cause disease, ensuring that patients receive accurate information about their risk of developing cancer. This is the first time that national variant data for germline genetic tests on individuals has been released by NDRS - or indeed worldwide.
Analysing the effectiveness of drugs through the Cancer Drugs Fund (CDF)
NHS England and NHS Improvement to collect and analyse data to evaluate the effectiveness of drugs made available through the Cancer Drugs Fund (CDF). The Systemic Anti-Cancer Therapy (SACT) team within NDRS have published a report for pembrolizumab for untreated PD-L1 positive, locally advanced or metastatic urothelial cancer. These reports show how the SACT dataset provides vital evidence to inform decision-making.
30-day mortality post-SACT analyses
This month, NDRS shared two 30-day mortality post systemic anti-cancer therapy (SACT) workbooks with NHS trusts in England. Both workbooks contain case-mix adjusted mortality rates using data submitted by trusts through their monthly routine SACT data uploads.

  • The first workbook includes adults only and reviews patients diagnosed between 2010 and 2018 being treated for prostate cancer in 2018-2019.

  • The second workbook includes children, teenagers and young adults only and reviews patients diagnosed with Acute Lymphoblastic Leukaemia (ALL) between 2010 and 2018 who were treated with SACT between January 2017 and December 2019.

The workbooks will be publicly available later this year. You can access previous versions of these workbooks on the SACT website and also through a new interactive app on CancerData.
Study published on thyroid cancer in children and adolescents
This month, the International Agency for Research on Cancer (IARC) published a study on thyroid cancer in children and adolescents. This is part of their project on the International Incidence of Childhood Cancer. The study found that increasing incidence in adolescents is similar to that seen in adults. This pointed to overdiagnosis. Data from all four UK nations were included in the analyses.
Public dashboard released on the impact on the COVID-19 pandemic on Systemic Anti-Cancer Therapy (SACT)
NDRS have launched a public dashboard on systemic anti-cancer therapy (SACT) activity and how it has been affected during the COVID-19 pandemic. The intended audience is anyone with an interest in how anti-cancer therapy has been impacted during the COVID-19 pandemic. This includes people planning cancer services and people campaigning for cancer patients. The dashboard currently includes data up to July 2020 and will be updated monthly. From April 2020 onwards, the number of systemic anti-cancer treatments decreased compared to the counts before the first COVID-19 restrictions. It was at its lowest in April 2020 (80%) and May 2020 (72%) compared to the same periods in 2019. Although systemic anti-cancer activity began to increase in June 2020 (89%) and July (82%), compared to 2019 activity, this was still below the 2019 and pre-pandemic activity.
10-year net survival by stage estimates published
Cancer Research UK (CRUK) have produced 10-year net survival by stage estimates for eight cancers for the East of England diagnosed between 2007 and 2017. This work was carried out in partnership with NCRAS. Results show that:

  • 10-year survival was poorer if diagnosed at the latest stage compared with the earlier stages.
  • 10-year survival was generally lower than the 5-year estimates for that site and stage, with notable variation by site and stage.
  • Melanoma, breast and prostate cancer 10-year survival estimates for those diagnosed at stage 1 remained high, whereas kidney and lung cancer 10-year estimates were significantly lower than 5-year survival at every stage.
  • The relative difference between 5- and 10-year survival estimates generally increased by later stage at diagnosis.

This work highlights the need for continued efforts to reduce the number of patients diagnosed at late stage - a key part of improving longer-term cancer outcomes.
2020 Cancer Services Profile updated
This month, an update to the 2020 Cancer Services Profile went live in the Fingertips tool. This update splits the existing cervical screening indicator (25-64 years) by age group (25-49 years, 50-64 years) to provide two new and distinct indicators in line with recommendations from the PHE National Screening Data and Information Lead. The new indicators have been provided for all years covered by Fingertips (2009/10-2019/20).
Virtual Events and Activities - have your say!
We’re disappointed to not be able to run our live conference this year. However, following the success and excellent feedback from the NDRS webinar series in 2020, we’re excited to start planning our virtual activities and events for this year.

As always, your feedback is very important to us and we’d love to hear your thoughts as to the type of events and topics you’d be interested in. We’d greatly appreciate if you could fill out this short survey by Friday 2nd April.
PHE Public Health Research and Science Conference 2021
The PHE Public Health Research and Science Conference will be taking place on Microsoft Teams from Monday 24th to Thursday 27th May 2021.

The conference aims to highlight the excellent quality and innovative science that is enabling effective public health practice and services nationally and globally. The conference will enable the sharing of good practice through engaging presentations and participation. There will be four data sessions over the course of the 4 day conference including presentations from NDRS projects.

The conference website is now open for bookings and you can register for free. Early career researchers may also submit an abstract for a potential brief oral presentation. Please visit the website for details of abstract categories and the link to submit online.  
Research Assistant/Associate at Newcastle University
Newcastle University is advertising for a Research Assistant/Associate with experience in statistics, epidemiology, or health information to join the Maternal and Child Health group, in the Population Health Sciences Institute. This post concentrates on PHE/NCARDRS projects. It involves working on a range of research studies in congenital anomaly and rare disease epidemiology, including analysis of existing data, contributing to the development of new projects, critically reviewing research literature, delivering training to NCARDRS staff, writing for publication, presenting results at meetings and conferences and supervising student projects. This is a fixed-term 24-month post and the closing date is 26 March 2021.
Further news
NCARDRS' Workplan launched on Rare Disease Day
To mark Rare Disease Day on the 28th February 2021, NCARDRS launched its new Workplan up to 2024. The Workplan has been developed in collaboration with stakeholders, including patient groups, clinicians and academics. It sets out how NCARDRS will continue its work to develop and run a comprehensive population-based registration service that collects and quality-assures data on congenital anomalies and rare diseases across the whole population in England.
NDRS paper included in a Best of 2020 Campaign
The journals Rheumatology and Rheumatology Advances in Practice have launched their Best of 2020 Campaign celebrating the year’s top articles. NDRS' paper on the risk of death among people with rare autoimmune diseases compared to the general population in England during the 2020 COVID-19 pandemic comes in the top 5% of all research outputs for the Altmetric Attention Score (AAS). The AAS indicates how much attention an output has received. This success demonstrates the need for good quality, population-based data on rare diseases. The team look forward to increasing their work with external partners and colleagues across NDRS to achieve more successes like this.
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