On 1^st 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.  

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: [email protected].

The Cancer Registration in England 2019 National Statistics report and data tables were published on 21^st 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.

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 1^st January and 31^st 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 1^st December 2021. We would greatly appreciate your feedback so that we can work on making the report as useful and impactful as possible.

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 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 [email protected] if you have any further questions.

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 1^st December 2021.

This will help us understand how the RCRD is being used, the impact it’s having and to make improvements.

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.

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.

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:

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.

A blog post was published on the NDRS website to mark World Cancer Research Day on Friday 24^th September. The blog highlights some of the brilliant work NDRS has undertaken in partnership with cancer charities, researchers, clinicians and patients, such as:

On Monday 25^th 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 25^th 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.

The NDRS Autumn webinar series has now finished! Thank you to all of our amazing speakers and to anyone who signed up.

If you missed any of the webinars, you can watch the recordings and see the slides here:

Webinar 4 – Findings from the NCARDRS rare disease data collection discovery phase

Webinar 5 – BARD – Breast screening After Radiotherapy Dataset

Webinar 6 – Get Data Out – the impact of cancer data

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.