NDRS Newsletter 18 September 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 data visualisation tool on conversion and detection rates for urgent suspected cancer referrals, the Blood in Pee evaluation results, an upcoming data release on survival national statistics, an update on the NDRS virtual webinars and an opportunity to join the NDRS senior leadership team.

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
Data visualisation tool on conversion and detection rates for urgent suspected cancer referrals published
In August, we published for the first time a data visualisation tool on CancerData to show conversion and detection rates for urgent suspected cancer referrals for different geographies in England and up to fourteen tumour types.

The tool presents data for England, NHS regions, Cancer Alliances, Sustainability and Transformation Partnerships and Clinical Commissioning Groups by financial years from April 2009 onwards.

A blog about this work is also available on the NDRS website.
Quarterly update for the 75% ambition staging tool released
Last month, the NDRS analytical team released the quarterly update for the 75% ambition staging tool with data for 2019 Quarter 1 (January to March). This data is presented at Cancer Alliance level.

The indicator measures the progress towards the ambition to have 75% of all stageable cancers diagnosed as stage 1 and 2 by 2028.
Case-mix adjusted 30-day mortality post-SACT analysis: CMAR workbook
We are pleased to announce that the 30-day mortality post-systemic anti-cancer therapy (SACT) workbook is now available on the SACT website. This first workbook contains case-mix adjusted mortality rates for patients diagnosed between 2010 and 2017.

We have included patients being treated for lung, gastric, pancreatic cancer and cancer of unknown primary (CUP) in 2017-2018 (depending on the site), as reported by NHS trusts in England through their monthly routine SACT data uploads.

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.
Recurrence by Trust workbook updated
We published the latest update of the Recurrence by Trust workbook with figures that cover 2014 to 2018.

The data shows the number of recurrences reported at a Hospital Trust level from both the COSD (Cancer Outcomes and Services Dataset) and CWT (Cancer Waiting Times) datasets.
Be Clear on Cancer: Blood in Pee evaluation results published
NCRAS has now published the evaluation report for the Be Clear on Cancer: Blood in Pee local, regional and first, second and third national campaigns.

The Blood in Pee (BiP) campaign was introduced to educate and encourage people to present early with symptoms suggestive of bladder or kidney cancer in order to promote early diagnosis. The primary message for the campaign was: 'if you notice blood in your pee, even if it's just the once, tell your doctor straight away'.

The number of newly diagnosed bladder cancers appeared to increase following all three campaigns while kidney cancer incidence increased following the first two campaigns. There was some evidence of a stage shift to an earlier stage at presentation in both kidney cancer (first campaign only) and bladder cancer (second and third campaigns only). This suggests awareness campaigns focused on encouraging people with blood in pee to visit their doctor can help ensure more people are diagnosed at an earlier stage in their cancer, potentially reducing the need for late stage treatments and any related side effects.

A blog and case study about this work is also available on the NDRS website.
Metric summaries for the 3rd national breast cancer in women over 70 campaign
This month, we published the final two metric summaries for the 3rd national breast cancer in women over 70 campaign.

The first metric looks at the impact that the campaign had on the number of breast cancers diagnosed, whilst the second metric explains whether the campaign affected the proportion of breast cancers diagnosed at an early stage.
Papers published on the effect of COVID-19 on cancer survival via two-week wait cancer referrals and ethnicity and surgical management of early invasive breast cancer.
NCRAS contributed to a paper by the Institute of Cancer Research in The Lancet which explores the effect of delays in the 2-week wait cancer referral pathway during the COVID-19 pandemic on cancer survival in the UK. Findings suggest a significant impact in lives and life-years lost if delays in the two-week wait pathway are extensive and prolonged.

NCRAS data was also used in a paper titled 'Ethnicity and surgical management of early invasive breast cancer in over 164,000 women'. The research found that after adjusting for different patterns of age and stage and presentation, the surgical management of early breast cancer is similar in all women, regardless of ethnicity.
Immunotherapy study for patients with metastatic melanoma
In August 2020, the International Journal of Cancer (IJC) published our paper examining outcomes (including survival and toxicity) for patients prescribed immune chekpoint inhibitors, approved as first line therapy for metastatic melanoma in England. This is an important piece of work that demonstrates the value of the SACT database to assess the impact of new therapeutics. Head to their website to access the full study.
Upcoming data releases
Cancer Survival in England: adult, stage at diagnosis, childhood and geographical patterns for patients diagnosed follwed up to 2019
On Friday 30th October, the NDRS analytical team will be publishing the National Statistics Cancer Survival in England. This publication presents cancer survival statistics for adults and children diagnosed between 2014 and 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 Alliance. This publication has expanded to cover more cancer sites than the previous iteration to broaden the statistics for stakeholders.

This publication will be available on gov.uk with interactive tools available on CancerData.
Upcoming webinar for clinicians - The CDF story; from NICE appraisal to routine commissioning
On Thursday 8th October 2020 (13:00-13:30), we will be hosting a webinar in collaboration with Professor Peter Clark, Cancer Drugs Fund (CDF) Clinical Lead at NHS England, which aims to answer questions raised by clinical staff.

The webinar will demonstrate how SACT data submitted by NHS trusts, are used by the National Institute for Health and Care Excellence (NICE) to determine whether innovative new cancer drugs currently funded in the CDF are clinically and cost-effective and should be made available through routine commissioning.

We will use the recent NICE guidelines on "Obinutuzumab with bendamustine for treating follicular lymphoma refractory to rituximab (TA629)" to demonstrate how SACT outcomes data contributed to the NICE committee recommendation for routine commissioning.

To book your place please register here.
NDRS webinars
This autumn, the NDRS will be running a series of lunchtime webinars to continue to share information about our latest work and developments. The webinars will start in October 2020 and the topics will include the Rapid Registrations Cancer Dataset for 2020, the SACT and RTDS datasets, more information on how NDRS use genomic and molecular data and overviews of rare disease and congenital anomaly registration.

Dates and booking details for each webinar will be sent out next week to all newsletter subscribers. We hope that you will welcome this opportunity to learn about and get involved in NDRS work.
Other news
Creating a Cancer Trusted Research Environment within NHSD
NCRAS is supporting the development of a Cancer Trusted Research Environment (TRE) in NHS Digital (NHSD). The TRE will be a safe-haven for researchers to access data to support research on COVID-19 and cancer, improving data access and avilability by securely hosting linked PHE and NHS Digital data in one place. Information governance and data protection processes will be in place and all researchers will need to request access via the NHS Digital Data Access Request Service (DARS).

Information about TRE's can be found on the NHS Digital website. More information about the Cancer TRE will be provided in next month's newsletter.
New vacancy - NDRS senior leadership team
We're hiring!

We have an exciting opportunity for someone to join the NDRS senior leadership team on a two year fixed term contract to accelerate and expand our collaborative working with a range of organisations and partners to drive further advancements across all areas of disease registration. We are looking for an experienced senior leader to provide the strategic direction to our partnership work. The postholder will need to identify and explore new opportunities for collaborative partnerships across the public, private and Third Sector and provide day to day oversight of operations and contracts.
Report on future data linkage
The Office for National Statistics (ONS) and the Government Analysis Function released a report this week on future data linkage. The report includes recommendations around training and collaboration, and a bibliography of other relevent publications.
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