NDRS Newsletter 22 January 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, the team at NDRS have been busy updating our data dashboards, as well as reviewing our progress throughout 2020 and planning for the future. We are also pleased to share with you this month the National Prostate Cancer Audit (NPCA) Annual Report and the UK Rare Disease Framework.

Wishing you all a belated Happy New Year, and best wishes for 2021. 

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
Updated 2018 cancer incidence and mortality numbers published
There are now updated 2018 incidence and mortality numbers publicly available on CancerData. These numbers are based on the National Statistics. They can be broken down by cancer site and age, and for larger cancer sites are also available by Clinical Commission Group (CCG).
First chemotherapy specialised services quality dashboard released
The Systemic Anti-Cancer Therapy (SACT) team within NCRAS released the first chemotherapy specialised services quality dashboard (SSQD) feed to NHS England and NHS Improvement at the end of last month. The dashboard provides quarterly metrics for each provider including: 30-day mortality post-SACT; 30-day unplanned emergency admissions post-SACT; intravenous chemotherapy administrations which result in an incident form; proportion of all patients starting SACT who have been entered into a clinical trial or a study addressing a systemic therapy-related treatment policy; and proportion of patients with suspected neutropenic sepsis who are given antibiotics within 60 minutes of sepsis being identified. The dashboard is now available to trusts and commissioners via the Quality Surveillance Programme portal.
Updated dashboard on CancerData to provide figures observed (or limited duration) cancer prevalence in England
On 5th January the NDRS and Health Data Insight partnership team published updated dashboards on both the CancerData website and CancerStats2 web-portal (requires N3 connection and account) to provide figures for 24-year observed (or limited duration) cancer prevalence in England. This observed prevalence counts the number of people that were diagnosed with a cancer between 1995 and 2018 and were still alive on the 31st December 2018. The data show that there were over 2 million people living with and beyond a cancer diagnosis in England at the end of 2018 by this measure; an increase of over 90,000 people on 2017.
The dashboard presents prevalence counts and rates for Clinical Commissioning Groups, Sustainability and Transformation Partnerships and Cancer Alliances in England, broken down by population demographics and for different tumour groups. The tumour groups provided in this release have been updated to more closely align with groups used by the ‘Get Data Out’ programme and, for the first time, includes 6-year limited duration prevalence estimates for bone and soft tissue sarcomas.
Data on conversion and detection rates for urgent suspected referrals – now with data up to March 2020
In December 2020, the CancerData tool on conversion and detection rates for urgent suspected cancer referrals in England was updated. This update added data up to March 2020. Data on crude referral rates was also included following feedback from users.

The workbook which presents data for England by financial years from April 2009 to March 2020 has also been updated.

Kaposi sarcoma (KS) incidence, survival and trends published
The latest publication from the RARECAREnet collaboration presents population-based incidence and survival across Europe for KS diagnosed during 2000-2007, with trends during 1995-2007. Younger patients, with predominantly ASIDS-related KS, formerly had a worse prognosis, but by the end of the study period their 5-year relative survival had increased to over 80%, similar to that in older age groups. The national cancer registration data for England constituted nearly one quarter of the study dataset.
First summary data from the new Rapid Cancer Registration Dataset (RCRD) published
NCRAS has published the first summary data from the new Rapid Cancer Registration Dataset which aims to support cancer services in responding to the impact of the COVID-19 pandemic. The spreadsheet, including data up to September 2020, reports monthly data on the numbers of new diagnoses and surgical tumour resection procedures, with comparison to the same data in the previous year. It includes data for England broken down by cancer group. More detailed data will be published on the CancerStats2 web-portal (requires N3 connection and account) next month. This will include data broken down by cancer alliances or trusts, by key patient or tumour factors, and information on treatment combinations. 
The National Prostate Cancer Audit (NPCA) Annual Report published
The National Prostate Cancer Audit (NPCA) annual report was published on 14th January 2020. The NPCA reports on process and outcome measures from all aspects of the care pathway for all men diagnosed with, or treated for, prostate cancer between 1st April 2018 and 31st March 2019 in England and Wales. The annual report also includes results from the latest round of the NPCA patient survey including patients’ views of their experience of care and their functional outcomes after radical treatment. NCRAS are the data collection partner for the audit, providing the data for England. If you have any questions regarding the audit please refer to the website or contact the Project Team via email.
UK Rare Disease Framework published
UK Rare Disease Framework was published this week. This supersedes the UK Rare Disease Strategy and aims to ensure that the lives of people living with rare diseases continues to improve. The framework will develop positive change in how patients with rare diseases are diagnosed, treated and cared for. NCARDRS is represented on the UK Policy Board and has been involved in the Framework development.

Each of the four nations of the UK were asked to highlight a key piece of work that has taken place in each respective nation since the UK Rare Disease Strategy was published in 2013. For England, the establishment and work of NCARDRS was chosen, demonstrating how it has improved data in congenital anomalies and rare diseases.
Paper published on 'Treatable but not Curable' cancer in England
In early January, a paper on Treatable but not Curable (TbnC) cancer in England was published in the BMJ Open. This is a new publication from a long-standing area of work for the NCRAS-Macmillan partnership. The study estimates the prevalence of people with cancers that can very rarely be cured but have the option to receive treatments that can slow the progression of their cancer, prolong life, and control symptoms. An estimated 110, 615 people in England were living with TbnC cancer at the end of 2015.
Paper published in BMJ on Treatment Variation in early breast cancer in the UK
A paper published in the BMJ on the Treatment variation in early breast cancer in the UK includes NCRAS data analysed as part of the National Audit of Breast Cancer in Older Patients (NABCOP).The paper discusses the substantial variations in the care of patients with early breast cancer in the UK, which may be leading to poorer outcomes. Variation is shown to be of particular concern in the management of older patients. The paper concludes that data transparency and accountability to promote debate, discussion and audit are useful tools in minimising the risk of substandard practice, as is the formal involvement of patients in national audits and governance.
'One for all, all for one: Cancer Survival in 2020' published in a Lancet report piece
The Systemic Anti-Cancer Therapy (SACT) team within NCRAS contributed towards a ‘One for all, all for one: cancer survival in 2020’ section in a Lancet report piece: Highlights 2020: framing health stories. It outlines how the true impact of COVID-19 upon cancer services is yet to be established, alongside global health inequalities in cancer outcomes.
Upcoming data releases and publications
Public-facing Systemic Anti-Cancer Therapy (SACT) COVID-19 dashboard
NCRAS is developing a public facing SACT COVID-19 dashboard aimed at anyone with an interest in how chemotherapy and other SACT activity has been impacted during the COVID-19 pandemic. This will be available on the CancerData website from mid-February.
2021 Cancer Research UK (CRUK) Early Diagnosis virtual series
CRUK invite you to join the CRUK Early Diagnosis virtual conference. There will be four sessions during February and March, each running on a Wednesday afternoon. Registration is free and the sessions include: 
Wednesday 3rd February: Cancer Screening: Current Challenges and Opportunities 

Wednesday 10th February: The Early Detection and Diagnosis Roadmap - Creating the Future

Wednesday 24th February: Optimising Management of Suspected Cancer in Primary Care

Wednesday 3rd March: Improving Cancer Pathways – showcasing insight and evidence from across the UK 

NDRS Vacancies
Senior Partnership Analyst
Applications are invited for a Senior Partnership Analyst position within the Systemic Anti-Cancer Therapy (SACT) team in NDRS. This position is offered on a 15-month fixed-term contract, with the option to work on a part-time basis. The successful candidate will work alongside the SACT team to support the work of their partnership with NHS England and NHS Improvements. Internal and external secondments are welcomed. Applications close on Tuesday 26th January.
Senior Cancer Intelligence Analyst
NCRAS is looking to hire two Senior Cancer Intelligence Analysts - one on a 12-month fixed-term contract, the other permanent. The successful candidates will work as part of NCRAS' analytical team to support a range of cancer analytical work that delivers the key NCRAS priorities. Internal and external secondments are welcomed. Applications close on Sunday 31st January.
Further News
Congratulations to the Cancer Alliance Data, Evidence and Analysis Service (CADEAS) team for being awarded the Team Award from Dame Cally Palmer, National Cancer Director
The CADEAS team (Jason Poole, Fazaan Dasu, Idil Mohamed, Dem Jardel, Joe Alderson and Matthew Booth, supported by Carolynn Gildea) has received the Team Award from Dame Cally Palmer (NHS England and NHS Improvement's National Cancer Director). The CADEAS team are being honoured for their work on health inequalities which is supporting the restoration and recovery of cancer services in response to the COVID-19 pandemic.
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