I am very pleased to be sharing the NDRS Strategic Plan for 2023/24 with you. The plan has been informed through consultation and discussion with our clinical leads and wider stakeholders and sets out our vision, core business and strategic priorities over the next 12 months. We are already starting to deliver against the plan and will bring you more information on our progress in the coming months. If you have any questions or feedback on the NDRS Strategic Plan please email [email protected]

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 new treatments available to patients while NICE decides whether treatments should be approved routinely on the NHS.

The National Disease Registration Service (NDRS), part of NHS England provide insight into patient outcomes, including duration of treatment and survival, based on routinely reported data, including data from the Systemic Anti-Cancer Therapy dataset (SACT).

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.

Following two recent NICE re-appraisals, the NDRS team have had two reports published along with the NICE committee papers: Ixazomib citrate for treating relapsed or refractory multiple myeloma and Axicabtagene ciloleucel for treating diffuse large B-cell lymphoma, mediastinal B-cell lymphoma and follicular lymphoma, both of which have been approved for routine commissioning. These reports show how the SACT dataset provides essential real-world evidence to inform committee decisions.

A paper has been published in the British Journal of General Practice on the National Cancer Diagnosis Audits (NCDA) in England, comparing the diagnostic pathway through primary care for cancer patients diagnosed in 2014 and 2018. The audits span the publication of the updated NICE guidelines for the referral for suspected cancers in 2015.

The NCDA collected primary care data on 5% and 20% of incident cancer cases in 2014 and 2018 respectively. Findings from the paper showed there were improvements to the diagnostic pathway in 2018 compared to 2014 with fewer patients having multiple consultations before referral, and more patients being referred and diagnosed quicker. The proportion of urgent referrals for suspected cancer increased and emergency referrals decreased.

The NCDA data can be made available for approved users through the Data Access Request Service.

We are pleased to share that the next release of the Cancer Quality of Life Survey dashboard, with age-gender adjustment, is now available on CancerData. This update adds responses from an additional 28,263 people, and now includes data from 111,470 people invited up to December 2022 who responded to the survey up to 7th February 2023. You will also be able to see adjusted data on the dashboard for the first time to enable more direct comparisons. Where relevant, figures have been adjusted for age group, gender and cancer type.

The NDRS Genomics team have contributed to a international study exploring the relationship between air pollution and lung cancer in non-smokers. We examined Epidermal Growth Factor Receptor (EGFR) mutation rates and correlated this with air pollution levels by linking patient postcode to air pollution data held by the Centre for Radiation, Chemical and Environmental Hazards (CRCE). The study findings demonstrated that rates of EGFR-mutated lung cancer correlated with higher levels of PM2.5 air pollution, a finding which was reproduced in other countries. The epidemiological findings using NDRS data were combined with extensive laboratory data, and the study was published in the prestigious journal Nature on 5 April 2023.

An NDRS data story can be found here and the findings have also been covered by national press.

We have now updated our cancer registration leaflet.

Thank you to trusts and organisations for your continued support in distributing the cancer registration patient information leaflets to ensure patients are aware of their data being collected and the right to opt-out.

We will be in touch with trusts already distributing to organise delivery. If you do not already stock our leaflets, please reach out to us on [email protected] and we can guide you to the form to order leaflets.

Health Data Insight CIC and the National Disease Registration Service (NDRS) are pleased to announce the release of Simulacrum v2, a collection of synthetic datasets generated from patient records held within the NDRS Cancer Analysis System (CAS). The Simulacrum has similar data structure and statistical properties to the real data, but contains no real patient information. Simulacrum v2 adds the radiotherapy dataset (RTDS) and genomics dataset to the previous collection of cancer registration data and systemic anti-cancer therapy dataset (SACT), and so can support a wider range of research by enabling users to explore data structures and simple properties, without risk to patient privacy.

For more information, please visit the Simulacrum website or email [email protected]