NDRS Newsletter 19 June 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 an update on the NDRS response to COVID-19, 2018 cancer registrations and 2018 stage data, a new blog on the NDRS website, and the NHSD e-referrals dashboard.

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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Update on the NDRS response to COVID-19
As part of PHE we continue to support the overall response to the COVID-19 pandemic. A number of staff have been redeployed to provide technical, operational and analytical expertise and we are working with the wider system to understand and prioritise the information requirements in relation to the impact of COVID-19 on cancer, rare diseases and congenital anomalies. As such, we are now having to look at the implication of this on our capacity and work programme, assessing where we might need to make changes to some of our core business to deliver on those new priorities.

We will share more information about any changes we are having to make in due course, but if you have any questions in the meantime please do contact us at NDRSengagement@phe.gov.uk.
Data releases and publications
2018 cancer registrations final release
In May, we published the latest National Statistics - Cancer Registrations, England: Final Release, 2018.

This work includes counts of cancer diagnoses and age standardised rates of all types of registerable tumours in 2018. Results are for the whole of England and the nine Government offices, as well as age and sex.

Stage at diagnosis for nine selected cancers have also been included for the first time.
2018 stage data released
On 29th May, the NDRS analytical team published the case-mix adjusted percentage of cancers diagnosed at stages 1 and 2 for cases from 2013 to 2018 (Experimental Official Statistic). This is accompanied by an interactive tool and a technical document that explains the methodological development.

The data is available as 1-year and 3-year estimates, by Clinical Commissioning Group for 21 cancer types combined and adjusts for the cancer site mix plus population, age, sex, and deprivation.

This will be the first time this more meaningful staging data will be published, providing intelligence to help monitor progress towards the 75% ambition.
NHS e-Referral Service open data dashboard
As part of our COVID-19 response, NCRAS analysts have been working with NHS Digital on cancer analysis using a broad range of datasets. We provided analytical input into a new open data dashboard published by NHS Digital, which uses weekly data from the NHS e-Referral Service.

The dashboard includes data on referrals, bookings and appointment slot issues at CCG level, broken down by specialty, and will be updated monthly. The data shows changes over time during the pandemic and can be used to support service planning.
Metric summaries for the Blood in Pee 4th national campaign
We have published the first four metric summaries for the Blood in Pee 4th national campaign. These metrics cover GP attendance and result referrals and diagnoses.

The results show that this campaign had a likely impact on people visiting their GP and receiving a referral. It is less clear if there were more diagnoses.
New blog examines the Fry and Turnbull effect
We published a new blog on the NDRS website called 'Examining the Fry and Turnbull effect on prostate cancer incidence in England'.

The blog investigates whether Steven Fry's and Bill Turnbull's announcements of their own diagnoses led to an increase in the number of prostate cancers diagnosed, and the extent to which celebrity influence on help-seeking behaviours may effect health service utilisation.
Paper published on the impact of delayed surgery due to COVID-19
PHE collaborated on a paper which was published in the Annals of Oncology. The work looks at the impact of delayed surgery due to Covid-19 and estimates nearly 5,000 attributable deaths from a three month delay in surgery.

This study recieved media attention from the BBC, Guardian, and Daily Mail.
Paper published on the long term outcomes for participants in the CaPP2 clinical trial
NCRAS data was used in a study that investigated the long term outcomes for participants in the CaPP2 clinical trial.

The study compared aspirin with placebo to investigate cancer prevention in individuals with a high risk of bowel cancer due to Lynch Syndrome.

It has been 10 and 20 years since the trial was completed. When the original volunteers were included in the analysis, those on asprin had 42% fewer colon cancers. For those who took aspirin for the full 2 years of the study, there were 50% fewer colon cancers.
CanGene-CanVar Pan Programme Webinar
On Friday 17th July, 2-4pm, Professor Clare Turnbull will be hosting a webinar to introduce the five-year, CRUK-funded CanGene-CanVar programme. The vision of the programme is to develop world-leading data resources, clinical and educational tools to leverage cancer susceptibility for the early detection and prevention of cancer. The programme is divided into six workstreams:

  1. Collection, linkage and analyses of nationally-collected genomic and cancer data
  2. Data clinical laboratory resources for genomic cancer variant interpretation
  3. Dynamic evidence-based clinical guidance
  4. Patient-facing decision-making tools
  5. Medical education
  6. Ethics, governance and policy

NDRS are collaborators on this programme, leading on the collection and linkage of nationally-collected genomic and cancer data (workstream 1) and also feeding into the resources for genomic cancer variant interpretation (workstream 2).

To learn more and hear an update on this programme, you can join the webinar. When prompted, enter the password C0g7c1V7wb.
Other news
Renewed National Lung Cancer Audit
We are very pleased to announce that the National Lung Cancer Audit (NLCA) has been commissioned by the Healthcare Quality Improvement Partnership (HQIP) to run until October 2021. The audit continues to be managed by the Royal College of Physicians (RCP) with the NDRS collaborating as data collection provider for the English data, providing extracts containing Cancer Registration, Cancer Outcomes and Services Dataset (COSD), Hospital Episode Statistics (HES), Radiotherapy Dataset (RTDS), Systemic Anti-Cancer Therapy Dataset (SACT) and death data. The reports that have been published over the last five years can be found on the NLCA website.

During the new term, the NLCA will publish a number of outputs including the annual report, covering data for patients diagnosed during 2019, and surgical outcomes data by surgical unit.
Now hiring - Project Manager FTC
We're hiring!

The Engagement and Awareness team at the National Disease Registration Service (NDRS) is currently looking for a project manager to join the team on a 12 month fixed term contract to cover maternity leave. We are looking for a motivated and pro-active project manager to support a number of projects that help us to improve awareness of and engagement with the NDRS with our stakeholders including patients, the public, healthcare professionals, charities and the wider healthcare community.
Latest US cancer statistics
The Centers for Disease Control and Prevention (CDC) have released the latest US cancer statistics. This work includes a data visualisation tool and a public database, and is an opportunity to acquire a more international picture of cancer.
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