NDRS Newsletter 21 May 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 publication of three new workbooks from the Systemic Anti-Cancer Therapy (SACT) team and brings you information on The Virtual Cardio-Oncology Research Initiative (VICORI). Also check the vacancies section for some exciting new job opportunities.

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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Updates within NDRS
Transition of NDRS to NHS Digital (NHSD)
The reforms of the public health system are underway and it is now confirmed that the National Disease Registration Service will be moving to NHS Digital from October 2021. A transition board between the two organisations has been established and it is the aim of all involved to ensure that the transition of NDRS from PHE to NHSD is as smooth as possible, both for staff and for the continuation of the service. We will keep you up-to-date via the newsletter. If anyone has any questions at this stage please send an email to NDRSengagement@phe.gov.uk.
Changes in leadership and senior posts
Jem Rashbass, Deputy Director for NDRS, has announced he will be retiring from his positions at PHE and NHSD from July this year. However, he will not be leaving the world of disease registration completely. Jem will return to NHSD in September as Chief Data Architect working two days a week and will oversee the safe transition of NDRS to NHSD alongside the expansion of national data curation. Jem has driven great change and advances in disease registration during his time as Deputy Director for NDRS and the team wish him all the best for his partial retirement and a relaxing summer!

In parallel, we are very pleased to announce that Sarah Stevens has been appointed as the Deputy Director for NDRS after being in the post in the interim for the last 18 months. Sarah will now continue to lead us as we transfer to NHSD.

Finally, we wave a very fond farewell to Lucy Elliss-Brookes, Head of NDRS Analysis. Lucy has been working with cancer data in some form for the last 22 years and has lead the analytical function to deliver outstanding products including the award winning Routes to Diagnosis. Lucy won’t escape us completely as she is moving to a new post of Head of Advanced Analytics at NHSD, where she will still have some involvement with disease registration and analysis. Lucy - congratulations and see you soon! We will be advertising for a new Head of Analysis very soon.
Data releases and publications
Paper published exploring the impact of the COVID-19 pandemic on skin cancer incidence and treatment in England
To mark sun awareness week from 3rd to 9th May, NDRS published a paper in partnership with The British Association of Dermatologists exploring the impact of the COVID-19 pandemic on skin cancer incidence and treatment in England. The study used high quality NDRS data from the Rapid Cancer Registration Data Set, and was published in The British Journal of Dermatology.

The study found that melanoma diagnoses fell 28% from April to November 2020 compared to the previous year which equates to an estimated 2671 fewer diagnoses than expected. Similarly, the number of basal cell carcinomas (BCCs) and cutaneous squamous-cell carcinomas (cSCCs) biopsied in April 2020 was just 22% and 58%, respectively, of the number biopsied in April 2019. It is thought that the drop in skin cancer diagnoses is due to fewer people seeing their GP about potential skin cancers during the pandemic.

Thanks to the communications teams at The British Association of Dermatologists and Public Health England, the findings were covered on ITV and recorded in The Times and The Sunday Times amongst others.
The Virtual Cardio-Oncology Research Initiative (VICORI)
VICORI is the world’s first whole country cardio-oncology research platform. The initiative was set up to investigate the interplay between cardiovascular disease and cancer. It combines multiple electronic health records sources including:

  • NCRAS.
  • Six cardiac audits held by the National Institute of Cardiovascular Outcome Research (NICOR).
  • Hospital data from Hospital Episode Statistics (HES).
  • Mortality data from the Office for National Statistics (ONS).

Patient data is examined from all adults with either a cardiac hospital admission / procedure or cancer diagnosis. The team also look at information on treatment and outcomes. The VICORI cohort consists of 6.2 million cancer diagnoses, and 3.8 million cardiac hospital admissions / procedures, with annual updates from the registries.

The VICORI team, led by researchers at University of Leicester, enthusiastically welcomes collaboration from healthcare professionals, clinicians and academic researchers. We encourage interested research collaborators to contact the team at vicori@le.ac.uk.
Systemic Anti-Cancer Therapy (SACT) case-mix adjusted rates workbooks released
This month, three new workbooks showing 30-day mortality post SACT were published on the SACT website and the interactive app on CancerData. The app combines all previous releases into one output and allows more interactive functionality in the graphs and tables.

 The workbooks review:

  • Adult patients (aged 18+) diagnosed between 2010 and 2018 being treated with SACT for prostate cancer in 2018-2019.
  • Adult patients (aged 18+) diagnosed between 2010 and 2018 being treated for Acute Lymphoblastic Leukaemia (ALL) in 2017-2019 and Acute Myeloid Leukaemia (AML) in 2018-2019.
  • Paediatric patients (aged 0-24) diagnosed with ALL between 2010 and 2018 who were treated with SACT between January 2017 and December 2019.

The workbooks contain case-mix adjusted mortality rates using data submitted by NHS trusts through their monthly routine SACT data uploads. They were initially shared with NHS trusts earlier in the year. Comments from the trust have been included in the companion briefs published alongside the workbooks.
Latest quarterly Rapid Data Review (RDR) sent to NHS trusts
The Systemic Anti-Cancer Therapy (SACT) team recently sent NHS trusts the latest quarterly Rapid Data Review (RDR) feed. This provides each trust with the details of patients who died within 30 days of receiving SACT at their trust in the latest treatment quarter. This release reviewed patients treated from October to December 2020. The next release will be shared in July and will include patients treated from January to March 2021. Feedback suggests that this data feed provides trusts with additional information on patients who have died in the community, and supports internal mortality and morbidity meetings.

Please note that RDR is not available for public viewing. If you have any further questions, please contact the SACT team at SACT@phe.gov.uk.
Report using data from the Life After Prostate Cancer Diagnosis (LAPCD) second survey published on CancerStats2
A report using data from the LAPCD second survey was published on CancerStats2 (requires N3/HSCN secure network connection). The study was designed to investigate the quality of life of men living in the UK 18 to 42 months after a diagnosis of prostate cancer. This report provides results from the follow-up survey which was distributed to men across the UK who completed the first survey and were still alive one year later. Surveys were completed between February 2017 and January 2018.
New reports on Holistic Needs Assessment (HNA) and Personalised Care and Support Planning (PCSP) published on CancerStats2
New reports have been released on CancerStats2 (requires N3/HSCN secure network connection) for Holistic Needs Assessment (HNA) Level 2 and Level 3, and Personalised Care and Support Planning (PCSP) Level 2. These reports will allow cancer teams to review their data and compare their service across different Multi-Disciplinary Teams (MDT) within their own trust, against other trusts and geographical areas. The reports include charts on Assessments/Care Planning Offered, Point of the Pathway, and Staff Role, as well as summary data tables.
Paper published on differences in mortality and life expectancy by education, occupation and wage
This month, NDRS co-authored a paper in the journal SSM – Population Health from the Inequalities in Cancer Outcomes Network (ICON) at the London School of Hygiene and Tropical Medicine (LSHTM). The study examined differences in mortality and life expectancy by education, occupation and wage. The findings show that using individual-level socio-economic measures revealed wider health inequalities than using area-level measures. For example, men with degree education had 7 years’ longer life expectancy than men with no qualifications.
European Network of Cancer Registries (ENCR) Scientific Meeting
Abstract submissions are now open for the ENCR Scientific Meeting, which will take place virtually from 16th to 18th November.

The event provides the opportunity for all European cancer registries to share research findings, exchange ideas and network.

To submit an abstract, please fill in this online form. A list of topics under which authors can submit their abstracts can be found here. The deadline for submissions is 31st May 2021.
'use MY data' Webinar
Registration is now open for the next use MY data webinar ‘A researcher’s journey to accessing patient data’, which will take place on Tuesday 25th May from 10:00 until 11:30.

The webinar will explore the steps that researchers take to access a patient's healthcare data - from application to data access through to a completed research project. This journey will be compared across the four UK nations. The list of speakers includes several researchers as well as a patient panellist, who will look at where the patient voice currently sits in this data access landscape and the benefit this brings.

The webinar is open to all and free to attend. It will be hosted on Zoom and the link to the registration page is here.

If you have any questions, please contact Emily Boldison at emily@usemydata.org.uk.
Systemic Anti-Cancer Therapy (SACT) Webinar
NDRS recently hosted a webinar to provide more detailed information on the 30-day mortality post-SACT analyses. The workshop was attended by 74 NHS staff members.

Please contact the SACT team via SACT@phe.gov.uk if you would like to access the slides and recording.
NDRS Lynch Syndrome Webinar
NDRS recently hosted a webinar on Lynch syndrome. Over 230 people registered for the event and 136 people watched it live.

The webinar recording has now been uploaded onto the NDRS website, along with a transcript of the Q&A and slides.
Partnership Analyst
NDRS are inviting applications for a Partnership Analyst to join the PHE/NHS England partnership. Candidates must have experience of undertaking strong statistical analysis and interpretations. The post holder will contribute to the development and delivery of the partnership analytical work programme and plan, manage and undertake analyses, interpretation and presentation of cancer data. They will also use and adapt national cancer intelligence products for local and regional use.

This is a fixed-term post until March 2022, and the closing date for applications is 25th May 2021.
Senior Analyst
NDRS are inviting applications for a Senior Analyst to support the cancer analytical team. Candidates must be strong team-players, with the ability to work proactively and under their own initiative. The post holder will lead on various projects to support key outputs for the analytical team, including the Radiotherapy Data Set (RTDS).

This is a permanent position, working part-time (28 hours per week). The closing date for applications is 27th May 2021.
Data Access and Confidentiality Manager for the Office for Data Release (ODR)
NDRS are inviting applications for a Data Access and Confidentiality Manager to work in the Office for Data Release (ODR). Candidates must be self-starters, comfortable with ambiguity, able to think big (while paying careful attention to detail), and enjoy working in a dynamic environment. The post holder will work closely with colleagues across the research community, clinicians and charities to resolve highly complex information queries and problems within health research, data release or associated areas. They will also evaluate research requests to ensure data items requested are consistent with the proposal aims and objectives.

This is a fixed-term post for one year, and the closing date for applications is 27th May 2021.
Cancer Data Analyst for the British Association of Dermatologists (BAD)
The British Association of Dermatologists (BAD) are inviting applications for a Cancer Data Analyst to work on important epidemiological projects on skin cancers. Candidates must have a strong statistical background and experience in analysing, interpreting and presenting routinely collected data. The post holder will work with colleagues to deliver NCRAS' analytical function for the BAD/PHE partnership. There will also be the opportunity to develop peer reviewed publications and formal NCRAS reports based upon project outputs.

This is a fixed-term post for one year, and the closing date for applications is 3rd June 2021.
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