NDRS Newsletter 20 November 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.

In this month's edition, we share the publication of a number of papers, the latest national statistics and the SACT workbook. We also share details of the NDRS webinar series, and two exciting job opportunities to come and work with us.

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.

Please share this newsletter with friends and colleagues
Data releases and publications
NCRAS has published the latest National Statistics on Cancer Survival in England. This publication presents cancer survival statistics for adults and children diagnosed between 2014 to 2018 and followed up to 2019. The cancer survival statistics are also presented by stage at diagnosis and by different geographical variations in England, such as Cancer Alliances and Sustainability and Transformation Partnerships. This publication has expanded to cover more cancer sites than the previous iteration to broaden the statistics for stakeholders. There is also a new application on www.cancerdata.nhs.uk to accompany the release.
Results from ovarian cancer audit feasibility pilot indicate geographical variation in accessibility of services
Ovarian Cancer Audit Feasibility Pilot (OCAFP) in England is preparing ground for a crucial, full-scale clinical audit in ovarian cancer, making make use of data routinely collected by gynae-oncology teams across the country.

Given the disparity in ovarian cancer survival highlighted in the first OCAFP report, this second output looked to see whether some of observed the variation may be attributable to differences in clinical practice across regions of England.

Results indicate that the probability of accessing surgery and chemotherapy varies across England, even after accounting for differences in patient and tumour characteristics.

These findings indicate an opportunity for identifying examples of best practice that could be disseminated to Cancer Alliances where treatment probabilities are lower, leading to improvements in therapy and better outcomes for women with ovarian cancer. 
In support of modelling exercises for SAGE to predict the impact of potential changes in patients’ Routes to Diagnosis during the COVID-19 pandemic, we published net survival analysis of 20 common cancers.

This data shows survival estimates at 1, 2, 3, 4 and 5-years after diagnosis for each of two-week wait urgent GP referrals, other GP referrals and those accessing cancer services via A&E. The data is also given by stage at diagnosis and sex. This work shows that survival is better for patients referred by their GP than those requiring emergency care. This is because patients requiring emergency care are more likely to have later stage disease.
Paper published indicates that deprivation is a significant risk factor for oral cancer
NCRAS has contributed to a paper titled “Area-level deprivation and oral cancer in England 2012–2016”. Deprivation-related inequalities were present for all oral cancer outcomes with a steeper rise at the more deprived end of the deprivation spectrum. Deprivation predicted oral cancer even after accounting for other risk factors.
Review of Be Clear on Cancer Campaigns shows impact on helping-seeking by patients and referral patterns
NCRAS has published a paper released online titled “Reviewing the impact of 11 national Be Clear on Cancer public awareness campaigns, England, 2012 to 2016: A synthesis of published evaluation results”.

In summary, it showed evidence that the BCoC campaigns impact helpseeking by patients and referral patterns by general practitioners, with some impact on diagnosis (incidence and stage) but no impact on survival.
Publication of second 30-day mortality SACT workbook
We are pleased to announce that the second 30-day mortality post-systemic anti-cancer therapy (SACT) workbook is now available on the SACT dataset website. The latest workbook contains case-mix adjusted mortality rates for patients diagnosed between 2010 and 2018.

We have included patients being treated for bowel, breast, myeloma and ovarian cancer in 2018-2019 (depending on site), as reported by NHS trusts in England through their monthly routine SACT data uploads. This output is a deliverable of a major partnership between PHE and NHS England and NHS Improvement on SACT data.

The rates are adjusted for key variables which means that rates can be compared between trusts and within trusts over time. Further information, including NHS trust’s comments on their data, are included in the companion brief and FAQ document. Please contact the SACT dataset team with any questions.
Upcoming data releases
Annual updates to the Radiotherapy Dataset (RTDS) in December
December will bring updates to two RTDS tools. The previously launched RTDS COVID-19 dashboard will be update, which will include new data up to and including September 2020. Please note, Cancerstats2 access is required for this tool.

Alongside the Cancerstat2 update we are launching a public facing version of the RTDS COVID-19 dashboard aimed at anyone with an interest in how radiotherapy has been impacted during the COVID-19 pandemic or campaigning for cancer patients. This will be available on the CancerData website.
Rapid Cancer Registration Dataset to be released in December
NCRAS plans to make the Rapid Cancer Registration Dataset available to researchers and other stakeholders through the Office for Data Release in early December. The dataset contains proxy tumour registrations and some associated events on the cancer patient pathway (e.g. surgery, radiotherapy and chemotherapy).

These registrations are defined using an algorithm that approximates the full cancer registration process but can generate proxy tumours within 4-5 months of the patients ‘real world’ diagnosis. It covers the period from January 2020 to the most recently available data – currently diagnoses in June 2020 – and will be updated monthly by NCRAS.
Research paper with results from the RECORDER project will be published on 4th December
NCARDRS is working in collaboration with the University of Nottingham on the Registration of Complex Rare Diseases – Exemplars in Rheumatology (RECORDER) project. Research stemming from the RECORDER project will be published about the risk of death during the 2020 UK COVID-19 epidemic among people with rare autoimmune diseases.

For more information about the RECORDER project or these research outcomes, you can contact megan.rutter@phe.gov.uk.
This publication presents conditional cancer survival statistics for adults diagnosed between 2014 to 2018 and followed up to 2019. Conditional survival figures will show up to 10-year survival for cancer patients having survived up to 5 years after diagnosis.

This publication presents the cumulative mortality by cancer and non-cancer causes to demonstrate potential differences in prognosis of cancer patients over time. The conditional crude probabilities publication will be published on the GOV.UK website as experimental statistics.
Cancer registration statistics: cancer mortality in England for 2018 will be released on 27th November
This publication presents rates of deaths from cancer in England in 2018, broken down by cancer site, age group and sex. It includes both crude and age-standardised rates. This publication is a supplement to the bulletin Cancer registration statistics: England 2018 final release, which was published in May 2020.
The annual refresh of the Cancer Services profile on Fingertips will be published on 1st December
This profile will present data at GP, PCN, CCG and national level for the 2019/20 financial year on screening, diagnostic services, Two Week Wait (TWW) referrals, emergency presentations and emergency admissions. The cancer incidence indicator will be updated with the latest year of data for 2018/19.

The data will be available through the fingertips website.
NDRS Webinar Series - Autumn 2020
This autumn, NDRS is running a series of free webinars to continue to share information about our latest work and developments.

Each lunchtime webinar focuses on a different area of NDRS, with an opportunity to ask questions following the presentation.

Upcoming webinars 
If you or your colleagues would like to take part in the upcoming webinars, please sign up for each webinar that you wish to attend.

Rare Disease Registration webinar - 25th November 2020
An overview of NDRS's work on rare diseases and the benefits of working in partnership for rare disease registration.
Molecular and Genomics webinar - 2nd December 2020
An overview of the molecular and genomic data collected and analysed across NDRS, including congenital anomalies, rare disease and cancer.
Congenital Anomaly Registration webinar - 9th December 2020
An overview of NDRS's work on congenital anomaly registration and analysis.

Past Webinars
The first three webinars during have been a success with over 115 people booking to attend per webinar. Recordings and slides are available and can be accessed via the links below.

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

The SACT Dataset webinar
An overview of the systemic anti-cancer therapy (SACT) dataset and the SACT team's analytical work.

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

Other news
Current vacancies in NDRS
NDRS Business Intelligence Manager
The Awareness and Engagement Team are recruiting to a Business Intelligence Manager on a fixed term contract to the end March 2022. This is an ideal opportunity for someone who would like to develop experience translating complex big data sets into meaningful insights and gain experience in using disease registration datasets. For informal queries about the role, please get in touch with the Health Services Data Manager (elsita.payne@phe.gov.uk). Applications close on 24th November 2020.
NCRAS Principal Cancer Intelligence Analyst
We have an exciting opportunity for someone to join the NCRAS analytical team on a permanent contract as Principal Cancer Intelligence Analyst within the National Disease Registration Service, PHE. The candidate will support a range of cancer analytical work that delivers the key NCRAS priorities. This post will develop and improve the production of our Official and National Statistics in cancer and deliver the support to the existing national clinical audits for cancer. We are looking for an experienced cancer analyst who is highly skilled in survival analysis and can work in a large and diverse team, line-managing the work of analysts in the NCRAS analytical team. Applications close on 1st December 2020.
Thank you for reading. If you have any questions or queries please get in touch. We would welcome your feedback on this newsletter too, and if you wish to unsubscribe please follow the link below.