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Centre For Cancer Genetic Epidemiology

 

Population-level analysis of cancer natural history, diagnostic pathways and outcomes across cancer types and ethnic groups in England

This project comprises two complementary workstreams that use national cancer registration data and stochastic modelling to address questions related to cancer progression, early detection, and health inequalities in England.

The first workstream aims to understand progression rates and quantify the impact of diagnostic delay on cancer stage progression, mortality, and economic outcomes across 12 common cancers in England. It will identify cancer types and population groups where diagnostic delay has the greatest potential harm.

The second workstream focuses on breast cancer. It aims to develop ethnicity-specific population-level natural history models of breast cancer, and to use them to evaluate alternative screening strategies. The evaluation will assess how these strategies affect cancer detection, stage at diagnosis, mortality, and overdiagnosis, and whether they could reduce inequalities relative to the current uniform screening programme.

The study is led by Professor Nora Pashayan, Dr Zhuang Xu, Dr Zhixiao Zhu.

 

Transparency notice

This privacy notice summarises how personal data are processed in this study, consistent with UK GDPR transparency requirements.

Pseudonymised patient-level data from the National Cancer Registration and Analysis Service (NCRAS) via the NHS England Data for Research and Analysis (NDRS) data packages, will be used for this study. No directly identifiable information will be requested or accessed. The NDRS data packages include cancer registration data and mortality outcomes.

The study population comprises all individuals resident in England diagnosed with one of 12 specified cancer sites and recorded in the NCRAS cancer registry between 2013 and 2023. The cancer sites are breast (C50, D05), prostate (C61), colorectal (C18–C20), lung (C33–C34), ovarian (C56), endometrial (C54), pancreatic (C25), stomach (C16), liver (C22), oesophageal (C15), bladder (C67) and kidney (C64) cancer. The dataset does not include any hospital, provider, or consultant identifiers.

The data will be accessed and analysed by named members of the University of Cambridge research team within the NHS Secure Data Environment approved for this project. The research team will use the data only within this secure environment and will not download, transfer or store pseudonymised record-level data outside the NHS Secure Data Environment.

The data are processed for the scientific research purposes described in this study, under Article 6(1)(e) and Article 9(2)(j) UK GDPR. The data are used solely for aggregate, non-disclosive analyses; no attempt is made to re-identify individuals, and the processing is not used to take any measure or decision about a particular individual.

Only pseudonymised patient-level data are processed; no directly identifiable information, such as names, NHS numbers, full dates of birth, or postcodes, is requested.

Access is restricted to named members of the research team who hold the appropriate permissions under the data sharing agreement with NHS England and have completed the required data governance training.

Access to the pseudonymised data will be retained only for the period permitted under the data sharing agreement with NHS England and in accordance with the applicable data governance requirements.

No identifiable or record-level data are shared with any third party; only anonymised, aggregate, non-disclosive outputs are released. Small cell counts will be suppressed in accordance with NHS England disclosure control guidance. No individual-level data will be released.

As the data are obtained from NHS England rather than collected directly from individuals, the provision of transparency information to data subjects and the handling of individual rights, including the rights of access and rectification and the route for complaints, rest with NHS England as the originating data controller. NHS England provides data only for individuals who have not opted out under the National Data Opt-Out.

More information about the National Data Opt-Out is available at: Choose if data from your health records is shared for research and planning - NHS

Cancer Natural History, Diagnostic Delays and Equity