NDRS Newsletter 18 December 2020
Welcome to the monthly NDRS newsletter
Each month we share the latest news from the National Disease Registration Service (NDRS) including new data releases, publications and events. 
It has been a challenging and strange year for all of us due to the COVID-19 pandemic, and the team at NDRS have adapted accordingly. As you can see in this month's edition, across NDRS we have been producing work such as data dashboards directly related to COVID-19 as well as continuing with many of the regular data updates and publications. We are also highlighting some of the achievements of the Rare Disease team and the Genetic Request service this month. 

Many festive greetings and best wishes for 2021. We look forward to continuing our work with you in the coming year to protect and improve the nation’s health. 

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
Paper published on risk of death of people with rare rheumatology diseases during COVID-19 
NCARDRS has published a paper in the journal Rheumatology from the Registration of Complex Rare Diseases - Exemplars in Rheumatology (RECORDER) project. The paper found that patients with a rare autoimmune rheumatic disease are at higher risk of dying during COVID-19 pandemic.

It is the first peer-review publication from the rare disease team in NDRS and this statement from the British Society of Rheumatology outlines why the paper is important to the rheumatology community. 
Joint summit finds that further research is needed to understand the impact of COVID-19 on cancer patients and prevention
NDRS worked with the National Cancer Research Institute (NCRI) and Cancer Research UK to host a Cancer/COVID-19 Research Summit which brought researchers from different disciplines together to discuss the impact that COVID-19 is having on cancer services and on research.

Several areas in which further research is needed were identified, as well as lessons from the pandemic to improve research, cancer care, and help prepare for future crises. These include understanding the biological and psychological effects of COVID-19 on cancer patients, risk factors associated with COVID-19 and cancer, the influence of COVID-19 on health-related behaviours and the impact of COVID-19 on cancer care pathways. The full meeting report can be found here.
Public facing COVID-19 dashboard launched for the Radiotherapy Dataset 
The Radiotherapy Dataset (RTDS) team have worked with Cancer Research UK and Macmillan partnership analysts to launch a public facing version on the CancerData website of the RTDS COVID-19 dashboard (which is only available behind a HSCN connection on CancerStats 2).

The public facing dashboard is accessible to anyone and is aimed at people with an interest in how radiotherapy has been impacted during the COVID-19 pandemic or those campaigning for cancer patients. Data is available from March 2019 to July 2020 and will be updated on a monthly basis. The tool allows filters to be applied to the reports so different tumour sites, treatment intent and geographies can be reviewed. 
COVID-19 Cancer Equity Data Pack published
The Cancer Alliance Data, Evidence and Analysis Service (CADEAS), in collaboration with NCRAS, published a COVID-19 Cancer Equity Data Pack.

This presents the latest monthly activity data on the number of urgent suspected Two-Week Wait (TWW) referrals, at national and regional level, broken down by tumour type and patient factors: deprivation, age, sex and ethnicity. The pack includes a summary of the national monthly data during the pandemic for each equity factor, with examples of how these data are being used to directly inform central and local activity in the restoration and recovery of cancer services.  
New NCRAS data dictionary published for applications to the Office of Data Release
NCRAS have published the latest version of the NCRAS ODR data dictionary (v4.1) and a new guide to completing the NCRAS data dictionary. This is a guide for applicants applying for ODR releases. It outlines how best to fill in the NCRAS data dictionary, including the sorts of decisions that need to be made by applicants to enable us to extract the data they require. 
Be Clear on Cancer: Skin cancer awareness local pilot campaign 2014 evaluation report 
NCRAS have published the Be Clear on Cancer: Skin cancer awareness local pilot campaign 2014 final evaluation report on our Be Clear on Cancer webpage. This publication is the last of 6 historical Be Clear on Cancer evaluation reports which have now been published. 
Annual update of the Cancer Services profile on Fingertips 
The 2020 annual update of the Cancer Services Profile went live in the Fingertips tool on 1st Dec. The indicators provide information at GP, PCN, CCG and national level for the 2019/20 financial year on demographics, screening, diagnostic services, Two-Week Wait (TWW) referrals, emergency presentations and emergency admissions. The cancer incidence indicator was updated with the latest year of data, for 2018/19.
Rapid Cancer Registration Dataset is available for request 
The Rapid Cancer Registration Dataset is now available for request through the Office for Data Release (ODR). The analytical questions most likely to be adequately answered using this dataset are healthcare resource utilisation queries regarding the COVID-19 pandemic.

This dataset should only be requested where the gold standard cancer registration data does not yet cover the period of activity of interest, and where the analytical question can be adequately answered despite the limitations of the data (see the detailed data quality documentation).

Please read the available guidance document before completing and submitting a rapid cancer registration data dictionary alongside the usual ODR paperwork. 
The National Statistics and Audits team in NCRAS published two bulletins: 

(i) Official Statistics Conditional crude probabilities of deaths in England, followed up to 2019. This publication presents the cumulative mortality by cancer and non-cancer causes to demonstrate potential differences in prognosis of cancer patients over time. The bulletin presents conditional mortality statistics for adults diagnosed between 2014 to 2018 and followed up to 2019. Conditional mortality figures will show up to 5 years from diagnosis for cancer patients having survived up to 5 years after diagnosis.  

(ii) the National Statistics Cancer registrations statistics: cancer mortality in England, 2018 bulletin presents rates of deaths from cancer, broken down by cancer site, age group and sex. It includes both crude and age-standardised rates. This publication is a supplement to the Cancer registration statistics: England 2018 final release bulletin, which was published in May 2020.
Paper published describes morbidity prevalence by cancer site 
NCRAS have authored a paper using NCDA 2014 data to describe morbidity prevalence by cancer site.

Morbidity prevalence patterns among individuals diagnosed with cancer were largely in line with those described previously, and standardised morbidity prevalence was comparable across cancer sites with a few exceptions (respiratory disease in individuals later diagnosed with lung cancer; diabetes among individuals diagnosed among liver/pancreatic/endometrial cancer).
Upcoming data releases and publications
Paper to be published next month on the Impact of the COVID-19 Pandemic on Radiotherapy services in England
The Radiotherapy Dataset (RTDS) team in NDRS are working on a paper for publication following the launch of the RTDS COVID dashboard on CancerStats 2. The paper titled ‘The Impact of the COVID-19 Pandemic on Radiotherapy services in England, UK: Data from the National Radiotherapy Dataset,’ has been accepted for publication by Lancet Oncology and will be published in the coming month. 
NDRS Webinar Series - Autumn 2020
This autumn, NDRS held six one-hour webinars, each one a different area of NDRS. We want to thank all of you who attended and contributed by asking questions, and we also thank each of the presenters who had to swiftly learn how to present online and shared some very interesting material in engaging ways. The webinars were very popular, with an average of 88 people joining live, an average of 159 booking to join, and lots of feedback asking for more webinars.

If you didn't manage to join live or book to join, or you'd like to watch them again, the webinars have been recorded for you. The recordings and presentation slides are available via the links to each webinar below.

An overview of the Rapid Registrations Cancer Dataset 2020, which constructs a proxy for the cancer registration dataset.

An overview of the systemic anti-cancer therapy (SACT) dataset and the SACT team's analytical work (recording to be uploaded soon).

An overview of the Radiotherapy Dataset (RTDS) and how the dataset is utilised to improve clinical practice.

An overview of NDRS's work on rare diseases and the benefits of working in partnership for rare disease registration.
An overview of the molecular and genomic data collected and analysed across NDRS, including congenital anomalies, rare disease and cancer.
An overview of NDRS's work on congenital anomaly registration and analysis.
Further news
Vacancy in NDRS: Principal Cancer Intelligence Analyst
Applications are invited for a Principal Cancer Intelligence Analyst position within the National Cancer Registration and Analysis Service (NCRAS) in PHE’s National Disease Registration Service on a fixed-term 15-month contract. The candidate will work as part of the NCRAS analytical team to support a range of cancer analytical work that delivers the key NCRAS priorities. We are looking for an experienced cancer analyst who can work in a large and diverse team. Applications close on Sunday 20th December.
The Martin Ward-Platt Award for outstanding contribution to the NCARDRS team
Martin was a Consultant Neonatal Paediatrician working with NCARDRS on an honorary contract as our Clinical Lead and had just recently retired from the Royal Victoria Infirmary in Newcastle when he died in July 2019. He was a huge supporter of PHE’s work to establish NCARDRS, to achieve national coverage and expand our registration of rare diseases and had been involved with congenital anomaly registration since the late 1980s. He gave a huge amount of input into coding and classification and our training and we miss his expertise, as well as his gentle charm and humour.

The NCARDRS team wanted to commemorate Martin through an annual award recognising a NCARDRS member of staff who has shown an outstanding contribution to the service. Following nominations reviewed by a panel, we are pleased to announce the runner up is Nicola Miller, Head of Registration (North) and our first winner is Jeanette Aston, Lead Senior Data Analyst for Rare Diseases. 
Since summer 2017, the rare disease team has transformed from two people with a huge task ahead of them to a team of five PHE staff and eleven honorary contract holders who are producing data and analysis that has real patient benefit. Jeanette has worked to welcome, embed and train new staff and honorary contract holders across NCARDRS, established new partnerships, learned and taught analytic skills, mentored staff, liaised with data providers and navigated an unprecedented and complicated path in expanding the numbers of rare diseases registered.

On this steady foundation, the team has been able to explore the rare disease environment and achieve more than the sum of its parts. NCARDRS now registers over 1,400 different rare diseases. Jeanette, amongst many other things, has helped to negotiate knotty information governance questions, overseen and undertaken analysis and made presentations to roomfuls of clinicians and patients, all the while taking the inevitable false starts, blind alleys and required understanding of complex rare diseases with good humour. 
An update from the NDRS Genetic Request Service
NDRS works very closely with Clinical Genetics services throughout the UK by making accurate, high-quality information available to Clinical Geneticists and Genetic Counsellors in a timely manner. This helps patients and their families make informed choices about their health, particularly where there is a suspicion of a familial cancer.

This year, NDRS has responded to ~16,000 requests (and >35,000 requests in total since the new online portal was launched in in January 2019). Our average turnaround time is 2.65 days and 99.99% of all requests have been reported back to services within our 10-day target. An annual report is being produced and will be shared early next year.
The value of databases like SACT
An editorial published in the journal Clinical Oncology explains the value of real-world chemotherapy data and databases like SACT for assessing new drugs beyond the evidence gathered through randomised control trials. 
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