NDRS Newsletter 21 August 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 release of the Be Clear on Cancer final local prostate cancer awareness evaluation report, the NCARDRS congenital anomalies statistics report 2018, a new interactive tool on median pathways, upcoming data releases, and NDRS webinars.

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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Changes to Public Health England
Most of you will be aware of the plans announced by Secretary of State The Rt Hon Matt Hancock MP to create a new National Institute for Health Protection (NIHP) 'to boost the UK's ability to deal with and recover from COVID-19'. The NIHP is due to be formally established and operating from the Spring 2021. Plans for the other PHE functions including NDRS have not yet been agreed and we would like to reassure you all that NDRS will continue with business as usual across all areas.

We will keep you updated on any changes as we hear about them, but if you have any questions or concerns regarding the changes and the impact this might have on your work with us at NDRS please email NDRSengagement@phe.gov.uk.
Data releases and publications
Be Clear On Cancer evaluation report and metric summaries published
We continue to measure the impact of Public Health England's Be Clear on Cancer campaigns which encourage those with cancer symptoms to seek medical assistance.

Last month we published the final local prostate cancer awareness evaluation report. The aim of the local pilot campaign was to raise awareness of the risk of prostate cancer among black men over the age of 45. The campaign ran from 20 October 2014 to 23 November 2014 across six London boroughs.

As well as this, we published three metric summaries for the 4th Blood in Pee National Campaign. These were: cancers diagnosed, stage at diagnosis and diagnostics in secondary care.

More information can be found on the NCRAS Be Clear on Cancer website.
Data on conversion and detection rates for two week wait referrals published
We have released data on conversion and detection rates for Two Week Wait (TWW) referrals for up to fourteen tumour types in England.

This is the first time this data has been made available and provides an insight into referral activites and their contribution to diagnostic pathways.

A workbook is also available which presents data for England by financial years, from 1st April to 31st March, from April 2009 onwards.
NCARDRS Congenital Anomaly Statistics Report 2018 released
NCARDRS have published their 2018 Congenital Anomaly Statistics Report.

For the first time, this report contains fully national data and it is a huge achievement for the NCARDRS team.

The report provides information on prevalence in England, timing of diagnosis, impact on perinatal and infant mortality and the association with maternal age for congenital anomalies. Data on Down's syndrome, Edwards' syndrome and Patau's syndrome is also presented for England for 2018.
NLCA Annual Report published
The National Lung Cancer Audit (NLCA) has published its latest Annual Report, reporting on 39,754 lung cancer patients diagnosed in 2018.

The NDRS are the data collection partner for the NLCA, providing the full cancer pathway for the patients diagnosed in English NHS trusts. The data suggest a trend in earlier stage diagnosis - 29% of patients in 2018 were diagnosed at an early stage compared to 26% in 2016 - with late stage diagnoses reducing to 49% (down from 53% for 2016 patients).

The NLCA have also published a qualiity improvement toolkit, benchmarked hospital results, the full dataset and information for patients and carers.

For any queries on the annual report, please contact the NLCA team or Natasha Wood, NDRS Audit Project Manager.
Paper published on survival from cervical cancer by age at first invitation to screening
We were involved in a paper called 'Survival from Cervical Cancer Diagnosed Aged 20-29 Years by Age at First Invitation to Screening in England: Population-Based Study'.

The data used in this study was collected, maintained and quality assured by us here at NCRAS. The findings show that age at first invitation to cervical screening does not affect overall survival, with mortality in women with stage IA cancer akin to that of the general population regardless of age at first invitation to screening.
New interactive tool on median pathway lengths published
The Cancer Alliance Data Evidence and Analysis Service (CADEAS) published an interactive Median Pathways Tool to provide Cancer Alliances with in-depth analysis of the median time taken for different intervals of the patient pathway for fifteen cancer sites (2013-2018).

This analysis stratifies the patient pathway into four intervals; referral to first seen in secondary care, first seen in secondary care to cancer diagnosis, cancer diagnosis to first multi-disciplinary team (MDT) meeting, and first MDT meeting to first treatment, as well as by socio-demographic factors, routes to diagnosis and geography.

Cancer Alliances can use the data from this tool to further their understanding of variation in median days taken for different intervals of the patient pathway from referral to first treatment. Cancer Alliances can also use the analysis to investigate differences as appropriate, to develop local strategies to address health inequalities, and to identify best practice that can be shared for faster diagnosis and improving patient experience.
SACT COVID-19 dashboard on CancerStats2
We have created a dashboard to help us to understand the impact of COVID-19 on oncology and haematology services in England. This will support clinicians and NHS teams providing systemic anti-cancer therapy (SACT) during the pandemic, to help rebuild services and future-proof current approaches.

We have a range of reports available, including a review of activity by trust, tumour group, and treatments, with an additional focus on immunosuppressing drugs. Users can select months from 2019 and 2020 to compare changes in activity during this time. We will continue to update the reports monthly.

These reports have been tested with the clinical community to ensure they display useful and meaningful information.

Please contact the SACT helpdesk with any further questions or feedback. Please note, this resource is only available to those with access to CancerStats2.
Upcoming data releases
Seven COVID-related datasets to be published - 25th August
On the 25th August, NCRAS will release seven COVID-related datasets, some of which begin to cover the time period of the pandemic:

  • A breakdown of age, stage, sex and cancer type for cancers diagnosed via the Two Week Wait (TWW) pathway from 2016-2018.
  • The conversion rate of urgent referrals for suspected urological cancers (TWW), broken down by age and diagnosed cancer type for referrals from 2013/14 to 2018/19.
  • The weekly volume of radiotherapy episodes from 1st October 2018 up to 31st May 2020 for rectal cancer, by gender, age band, region and prescribed total dose and prescribed total fractions (short and long course).
  • The weekly counts of radiotherapy episodes and attendances up to May 2020 by cancer type, intent, and breast cancer dose fractionation.
  • The number of cancer patients starting chemotherapy regimens in 2018, by age group.
  • The chemotherapy activity for the ten most common cancer types up to September 2019 by treatment intent and cancer type, and by month of activity.
  • The numbers of patients receiving systemic anti-cancer therapy and receiving immunosuppressive drugs between 1st April 2018 and 31st March 2019.

Please note, the link to the datasets will not go live until 25th August. You will not be required to log in.
Quarterly stage release - 28th August
On 28th August, the NDRS will be updating the staging interactive tool with a new quarter (January to March 2019) for the percentage of stageable cancers diagnosed at stage 1 and 2 in England, by Cancer Alliance.

This forms part of the quarterly update that provides intelligence to monitor the progress towards the 75% ambition. Links to the newly published data on the interactive tool will be made available in next month's newsletter.
Case-mix adjusted 30-day mortality post SACT analysis: CMAR workbook and guidance documents - End of August
We will be releasing a workbook containing case-mix adjusted 30-day post-SACT mortality rates on the SACT website at the end of August. The case-mix adjusted mortality rate is an estimate of a trust's mortality rate, taking into account the wide variety of patients treated in each trust.

This first workbook reviews patients being treated for lung, gastric, pancreatic cancer and cancer of unknown primary (CUP) . A range of other cancer sites will be included in future releases. Guidance and a FAQ document will also be available.

Alongside the release of the workbook, we are now also supplying a second data feed directly to NHS trusts; the Rapid Data Review (RDR). This contains sensitive data so will not be publicly available. Both data releases have been designed to support NHS providers with their 30-day post-SACT mortality reviews.
NDRS webinars
Despite not being able to host our usual events and activities this year, we can confirm we will be rolling out a set of short webinars as a way for NDRS to continue to share information about our latest work and developments.

The webinars will start in October 2020 and the topics for these sessions will include an update on the rapid cancer registrations for 2020, SACT and RTDS updates and more information on how NDRS uses genomic and molecular data.

We will bring you more specific information including dates, the set topics for the webinars and how you can get involved in next month's newsletter.
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