NDRS Newsletter 21 April 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 shares the re-launch of our data stories, brings you information on the latest cancer survival index for Clinical Commissioning Groups, and is advertising for two positions within the PHE/NHS England Radiotherapy Dataset Data Partnership (see vacancies section). Also check the events section for news on how to sign up for a webinar on Lynch syndrome coming later this month.

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 provided by patients and collected by the NHS as part of their care and support. The NDRS uses this 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
Data story published on the RECORDER project
To mark World Health Day on 7th April, NDRS published a data story on the RECORDER project. Data stories explain how NDRS uses patient information to improve diagnosis and treatment of cancer, rare diseases and congenital anomalies. This was produced in collaboration with 'use MY data', which is an independent patient movement focused on promoting the benefits of using patient data to save lives and improve outcomes.

The RECORDER project used patient data to understand how people with rare autoimmune diseases were affected during the first wave of the COVID-19 pandemic. The study found that:

  • The risk of dying was higher for people with rare autoimmune diseases compared to previous years and compared to the general population.
  • The risk of dying was similar for men and women and rose from the age of 35. In the general population, women were less likely to die of COVID-19 than men of the same age and the risk of dying rose from the age of 55.

The data story highlighted the need for high-quality data from a whole population to underpin research. This data story is part of a wider series available on the NDRS website, with more data stories planned in the coming year. If you have any ideas for potential topics, let us know by emailing NDRSengagement@phe.gov.uk.
New Rapid Cancer Registration and Treatment data dashboards launched
This month NDRS launched new Rapid Cancer Registration and Treatment data dashboards. These dashboards aim to help cancer services to understand and respond to the impact of COVID-19 on cancer diagnoses and related treatment.

  • There is a public version on CancerData and a CancerStats2 version with additional breakdowns. The CancerStats2 version requires an N3/HSCN secure network connection to access.
  • Data has been used from the Rapid Cancer Registration Dataset. This dataset provides monthly estimates of the number of cancer diagnoses, the volume of surgical tumour resection procedures and the proportion of patients receiving a surgical tumour resection in England. The dashboards also present data on the proportion of patients receiving chemotherapy or radiotherapy, and treatment combinations.
  • The data is broken down by cancer group and patient or tumour factors. This includes age, sex, deprivation, ethnicity, route to diagnosis, stage at diagnosis or cancer alliance, with additional cancer alliance and trust data on CancerStats2.
  • The dashboards currently include estimates of cancer diagnoses up to November 2020. They will be updated regularly as more data becomes available, with the next update scheduled for 28th April.
  • An updated summary spreadsheet of England data on cancer diagnoses and volume of surgical tumour resections has also been released.
Radiotherapy Dataset (RTDS) and Systemic Anti-Cancer Therapy (SACT) COVID-19 dashboard updated
The RTDS and SACT public dashboards share data on how radiotherapy, chemotherapy and other SACT activity has been impacted during the COVID-19 pandemic. The dashboards are available on the CancerData website and are scheduled for another update on 28th April.
Public Health Matters blog published on cancer in children and young people
A blog supporting the recent release of the UK Cancer in Children, Teenagers and Young Adults statistics report was published on Public Health Matters. This report used high quality NCRAS data. The blog outlines five key messages from the report:

  • Every day in the UK 10 children or young people are diagnosed with cancer.
  • Children and young people get different types of cancer compared to adults.
  • Around 1 in 5 cancers diagnosed in teenagers and young adults may be preventable.
  • Cancer survival in children and young people has improved for most cancers.
  • Our data helps the understanding of children’s and young people’s cancers.
Cancer survival index for Clinical Commissioning Groups released
The National Statistics for Cancer survival: index for Clinical Commissioning Groups, 2003 to 2018 was released at the end of March. This cancer survival bulletin includes estimates for the one-year index of cancer survival by Clinical Commissioning Group for all cancer combined and breast, colorectal and lung for adults diagnosed between 2003 to 2018 and followed up to 2019. This publication includes interactive RShiny visualisations available on Cancer Data.
COVID-19 Cancer Equity Data Packs updated
The monthly COVID-19 Cancer Equity Data Packs present the latest (January 2021) and pre-COVID activity data on the number of urgent suspected Two-Week Wait referrals (seen by a specialist) and first definitive treatments, broken down by tumour type and patient factors: deprivation, age, sex and ethnicity.
This data, presented at national and regional level, can be used to monitor healthcare access for particular patient groups and demographics to identify variation and inform decision making around tackling inequalities.
This work uses Cancer Waiting Times data. It is sourced from NHS Digital, NHS England and NHS Improvement and is collated, maintained and quality assured by NCRAS.
Revised copy of the NCRAS cancer registration data dictionary published
This month the Office for Data Release (ODR) launched a revised copy of the NCRAS cancer registration data dictionary (version 4.4). This updated workbook introduces National Lung Cancer Audit (NLCA) lung cancer registration data extended to 2018, and for the first time the ODR offer will include somatic mutation data.

You can download a copy of the revised NCRAS Data Dictionary and view the guidance here.
Study published on primary liver cancer in the UK
This month the Hepatocellular Carcinoma UK (HCC-UK) and NCRAS partnership, funded by the British Association for the Study of the Liver (BASL), published their first liver cancer paper in the journal JHEP Reports. The paper is a UK-wide analysis of incidence, incidence-based mortality and survival trends in liver cancer over 20 years. The results show striking increases in liver cancer incidence and mortality rates across the UK, with the highest rates in Scotland. Although big improvements in survival have been made, less than half of people survive in the first year after diagnosis.
Three reports published following recent appraisals of Cancer Drugs Fund (CDF) drugs
Since July 2016, the National Institute for Health and Care Excellence (NICE) has been appraising all new cancer drugs, including those made available through the new Cancer Drugs Fund (CDF). The CDF aims to make promising treatments available to patients while NICE decides whether treatments should be approved routinely on the NHS.

A fundamental element, integral to the success of the CDF, is the partnership between NHS England, NHS Improvement and PHE. The partnership provides insights into patient outcomes, including duration of treatment and survival, based on routinely reported data. This includes data from the Systemic Anti-Cancer Therapy dataset (SACT).

Our CDF reports, together with clinical trials data, inform NICE committee decision making on whether a drug should be made available to patients routinely on the NHS.
Following several recent NICE re-appraisals of CDF drugs, NDRS have had three reports published along with the NICE committee papers:

These reports show how the SACT dataset provides essential real-world evidence to inform NICE committee decisions.
Update to the Emergency Presentations of Cancer metric
NCRAS has updated the spreadsheet for Cancer Outcomes: Emergency Presentations with data up to September 2020. This metric estimates the proportion of all malignant cancers where patients first presented at hospital as an emergency admission. This information is presented at Clinical Commissioning Group, Cancer Alliance and England level, and by site for England.
NDRS Lynch Syndrome Webinar
To mark Bowel Cancer Awareness month this April, we’re delighted to invite you to an upcoming webinar showcasing the fantastic work that the NDRS molecular and genomics team have undertaken in collaboration with Bowel Cancer UK and Newcastle University.

Taking place on Friday 30th April, 1-2pm BST, Professor Sir John Burn (Newcastle University), Fiona McRonald and Steven Hardy (NDRS) will present their work in creating the first ever national dataset for Lynch syndrome. The dataset comprises more than 19,000 patients tested over a 20 year period. 

Lynch syndrome is a genetic condition that increases the lifetime risk of bowel cancer to up to 80%. Funded by Bowel Cancer UK, this national registry will help inform surveillance, treatment and care of people with the condition.
PHE Public Health Research and Science Conference 2021
The PHE Public Health Research and Science Conference will be taking place 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.

A further and final call for abstracts has been opened for submission by 23:59 on Sunday 25 April for potential brief oral presentation. Please visit the website for details of abstract categories and the link to submit online.

The conference website is now open for bookings and you can register for free.
National Cancer Research Institute (NCRI) Festival
The NCRI are now accepting abstract submissions for the NCRI Festival: Making cancer research better together, taking place virtually from 8th to 12th November. The Festival will feature a number of topical sessions, panel discussions, debates and co-creation sessions on strategic topics.

The deadline to submit an abstract is 13th June, and the research must fall within the following areas:

  • Discovery/underpinning research
  • Prevention and early detection
  • Treatment
  • Living with and beyond cancer
  • Clinical trials

You can register for a reduced fee with early bird registration until the 30th June. After this date there is a standard fee for registration.
Radiotherapy Dataset (RTDS) Partnership Program Manager
NDRS are inviting applications for a Program Manager to lead the PHE/NHS England (NHSE) RTDS Data partnership. Candidates must have project management experience and experience working with cancer datasets. The post holder will coordinate the exciting, challenging work program and will work with colleagues across PHE and NHSE, as well as other public, private and third sector bodies.

This is a fixed-term post until 31st December 2023, and the closing date for applicants is 23rd April 2021.
Principal Cancer Intelligence Analyst
NDRS are inviting applications for a Principal Cancer Intelligence Analyst within the PHE/NHS England (NHSE) Radiotherapy Dataset (RTDS) Data Partnership team.

The successful candidate will work at a senior level on the PHE/NHSE RTDS Data Partnership and as part of the NCRAS analytical team supporting public health delivery in England. This is an analytical and leadership role, and will require both delivering through yourself and others.

This is a fixed-term post until 31st December 2023, and the closing date for applicants is 23rd April 2021.
Further news
NCRAS and Newcastle University work highlighted as the major cancer prevention advancement of 2020
Work on Lynch syndrome by NCRAS and Newcastle University has been highlighted by the American Society of Clinical Oncology (ASCO) as the major cancer prevention advancement of 2020. The original work was published in the journal The Lancet, and used NCRAS data for long term follow-up of Lynch syndrome participants in the CaPP2 trial of aspirin prophylaxis.
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