NDRS Newsletter 22 October 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 published the Cancer Registration in England 2019 National Statistics report, which cover detailed incidence and mortality statistics for the first time. We also share the publication of the Congenital Anomaly Statistics Report for 2019.

The National Disease Registration Service is part of NHS Digital and collects data from the NHS about cancer, rare diseases and congenital anomalies in England.

NDRS is made up of the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS). NDRS uses data provided by patients and collected by the NHS as part of their care and support. NDRS uses this data to detect changes in the health of the population and to help the NHS improve the diagnosis and treatment of these diseases.

Please share this newsletter with networks and colleagues
Others can sign up to our newsletter here.
Updates from NDRS
NDRS transitions to NHS Digital
On 1st October responsibility for the National Disease Registration Service transferred to NHS Digital from Public Health England (PHE). The transfer is part of the government’s reforms to the public health system announced in March 2021 and means that NHS Digital is now the data controller for data collected by NDRS under data protection law.
Fran Woodard, NHS Digital’s Executive Director of Data Services, celebrated the transition, saying “I’m delighted to welcome the National Disease Registration Service to our organisation which will allow us to bring together our shared passion for enabling high quality data to be used to improve health outcomes. Bringing together NDRS’ and NHS Digital’s data, capability and technical expertise will provide significant benefits for patients, clinicians, and the wider health and social care system over coming years by providing a more comprehensive data service for the NHS, and we’re excited to be able to work even more closely together to help improve services for patients and frontline staff. I’m also looking forward to getting to know the individuals and organisations who work with NDRS and will be looking for opportunities to do that over the coming months.  
“We’re working hard to ensure that the transition of services is as smooth as possible for NDRS’ customers and its staff. There will be no immediate change to how data is currently processed and handled, minimal changes to current processes, and all current communication channels will be maintained”.
There is currently a pause on NDRS data release applications to allow for transition to complete, and we will update you as soon as the pause is lifted. Requests to access NDRS data will continue to be made via the Office for Data Release (ODR).
If you have any questions, please feel free to email us at: NDRSenquiries@nhs.net.
Data releases and publications
Cancer Registration in England 2019 National Statistics report released
The Cancer Registration in England 2019 National Statistics report and data tables were published on 21st October. This is the first publication from NDRS since transitioning to NHS Digital, and the report and data tables are now available on NHS Digital’s website.

The publication contains counts, age-standardised rates, and non-standardised rates by 3-digit and 4-digit ICD-10 cancer site, age, sex and geographical region (3-digit ICD-10 only) for cancers diagnosed in 2019 in England.

For the first time, counts and rates have been provided by Index of Multiple Deprivation quintile. Counts and rates by stage at diagnosis have also been expanded to include 18 cancer groups.
The Cancer Registrations Statistics, England report title
Congenital Anomaly Statistics Report for 2019 released
NCARDRS released the Congenital Anomaly Statistics Report for 2019. This is NCARDRS’ fifth annual congenital anomaly statistics report and the second report to contain national data for the whole of England. The report contains information on congenital anomalies detected in babies delivered between 1st January and 31st December 2019. In 2019, there were a total of 13,306 babies with one or more congenital anomalies notified to NCARDRS covering 614,952 total births (live births and stillbirths). Total birth prevalence was 216.4 per 10,000 births, reflecting one baby diagnosed with a congenital anomaly for every 46 births in 2019.

If you have read any of the congenital anomaly statistics reports over the past 6 years, we would love to hear from you. Please could you fill out this anonymous survey by 1st December 2021. We would greatly appreciate your feedback so that we can work on making the report as useful and impactful as possible.
Map of NCARDRS reporting regions England, 2019
First Lynch syndrome dashboard released
The NDRS Molecular and Genomics team have released the first Lynch syndrome dashboard in CancerStats2 (requires a secure HSCN connection) showing rates of germline genetic testing between 2014 and 2018 in colorectal and endometrial cancer.

NICE guidance recommends that Lynch syndrome testing is performed in all patients diagnosed with colorectal (DG27) and endometrial (DG42) cancer. Compliance with the NICE guidance is low and this is the first time that national data has been presented showing equity of access to testing and how this varies by Cancer Alliances.

These reports will be used by Cancer Alliances and Genomic Medicine Service Alliances to evaluate and inform implementation of Lynch testing pathways nationally for colorectal and endometrial cancers.
The first page of 'Implementing Lynch syndrome testing and surveillance pathways: A handbook to support local systems'
Aggregate data on germline genetic variants released to the UK Cancer Variant Interpretation Group
The NDRS Molecular and Genomics team have released aggregate data on germline genetic variants to the UK Cancer Variant Interpretation Group (CanVIG-UK).

The aggregate data includes information on sequence variants detected – including how frequently they were detected – in cancer susceptibility genes which predispose individuals to breast and ovarian cancer (e.g. BRCA1/2) and colorectal cancer (e.g. mismatch repair genes in Lynch syndrome).

This aggregate data is used by scientists and clinicians within NHS genomic services to better understand the results of genetic testing and ensure patients receive accurate and appropriate advice about their cancer risk for themselves and family members.

Get in touch at NDRSenquiries@nhs.net if you have any further questions.
The logo for the UK Cancer Variant Interpretation Group
Rapid Cancer Registration Dataset dashboard updated
The Rapid Cancer Registration Dataset (RCRD) dashboard has recently been updated to make it more user friendly. The dashboard also uses the latest available data (CAS2109), including diagnoses up to June 2021, and a new metric has been added - the early stage proportion.

If you have used the RCRD before, we would love to hear from you. Please fill in this anonymous survey by 1st December 2021.

This will help us understand how the RCRD is being used, the impact it’s having and to make improvements.
An icon of data
Further breakdowns of referral, conversion and detection rates for urgent suspected cancer referrals released
NDRS have released age, sex and socio-economic deprivation breakdowns of referral, conversion and detection rates for urgent suspected cancer referrals. This data is included in the Demographic tab of our CancerData data tool, along with existing data. It presents statistics from April 2009 to March 2020.
The Public Health England, Cancer Research UK and NHS logo from the Cancer Waiting Times (CWT) CancerData page
Report published on the Systemic Anti-Cancer Therapy dataset
Following a recent National Institute for Health and Care Excellence (NICE) re-appraisal, the NDRS team have had a report published along with the NICE committee papers: Abemaciclib with fulvestrant for treating advanced hormone-receptor positive, HER2-negative breast cancer after endocrine therapy. This report shows how the Systemic Anti-Cancer Therapy (SACT) dataset provides essential real-world evidence to inform committee decisions.

Since July 2016, the National Institute for Health and Care Excellence (NICE) has been appraising all new cancer drugs, including those made available through the new Cancer Drugs Fund (CDF). The CDF aims to make promising treatments available to patients while NICE decides whether treatments should be approved routinely on the NHS.

The cancer data partnership between NHS England and NHS Improvement and NHS Digital is integral to the success of the CDF. The partnership provides insights into patient outcomes, including duration of treatment and survival, based on routinely reported data. This includes data from the SACT dataset.

Our CDF reports together with clinical trials data inform NICE committee decision making on whether a drug should be made available to patients routinely on the NHS.
An icon of a drug
Paper published on trends on 2-week wait referrals and their association with GP practice characteristics
A paper using NCRAS data was published on trends on 2-week wait (2WW) referrals and their association with GP practice characteristics. The study found that:

  • from 2009/2010 to 2018/2019 2WW referrals increased on average by 10% year on year
  • the detection rate increased from 41% to 52% over the 10 years
  • in 2018/2019 an additional 66,172 cancers were detected via 2WW compared with 2009/2010.

The linked editorial on “urgent cancer referrals: how well are they working and can they be improved?” will need to be considered to help address the concerns outlined by the IPPR report.
2WW referrals and detection rate in England, 2009/2010 to 2018/2019
NDRS blog published for World Cancer Research Day
A blog post was published on the NDRS website to mark World Cancer Research Day on Friday 24th September. The blog highlights some of the brilliant work NDRS has undertaken in partnership with cancer charities, researchers, clinicians and patients, such as:

  • research on the diagnosis of ovarian cancer
  • Lynch syndrome and bowel cancer research
  • the ‘Predict’ breast cancer tool and
  • research on the diagnostic pathway.
The World Cancer Research Day logo
Upcoming data releases and publications
First results from the Cancer Quality of Life Survey to be published at the end of October
On Monday 25th October, NHS England and NHS Improvement and NHS Digital are publishing the first results from the Cancer Quality of Life Survey. The rolling survey, launched in 2020, provides valuable information to NHS staff and researchers on cancer patients’ quality of life. This can be used locally and nationally to inform policy and planning. It can also be used for ongoing monitoring and research.

All of the data will be available on CancerData, which is a public-facing data dashboard. The first release of the dashboard includes aggregated, anonymised data from almost 35,000 cancer patients, 18 months post-diagnosis. The initial release will include data from the first three cancer types reported: breast, prostate and colorectal. More cancer types will be added as the survey expands.

Join us for a webinar at 10am on 25th October where we will share the results of the survey and introduce you to the interactive dashboard. Speakers will be available to answer questions during a live Q&A session at the end. You can view the programme and register for this free event now. We hope you will be able to join us but if you are unable to attend the live webinar, please register to receive information about accessing the recording after the event.

An image showing different factors that make up someone's quality of life.
NDRS Autumn Webinar Series
Further news
Research on detecting cancer in primary care wins RCGP Research Paper of the Year award
Researchers within the CanTest collaborative have won "the 2020 Research Paper of the Year for Clinical Research", awarded by the Royal College of General Practitioners, for their paper on detecting cancers in primary care. The study used cancer registration data, and the team sought advice from NCRAS colleagues.

The research shows that CA125, a simple blood test available in primary care, is useful for ovarian cancer detection in symptomatic women attending their GP and could help identify other types of cancer.

The study is the first to evaluate CA125 within primary care and has important implications for GPs and clinicians. 
The CanTest logo
Thank you for reading. If you have any questions or queries please get in touch. We would welcome your feedback on this newsletter too, and if you wish to unsubscribe please follow the link below.