Cancer survival methodological developments and their Applications

Information you need to know: 

The Division of Public Health & Epidemiology is part of the University of Leicester. Further information on the institution can be found here: https://le.ac.uk/. 

The University of Leicester is the Data Controller for your information. The Data Protection Officer is: Parmjit Gill. who can be contacted by emailing: dpo@leicester.ac.uk  

This Privacy Notice provides information about how the University of Leicester collects and uses your personal information.

What information are we collecting or using?

The NHS England National Disease Registration Service (NDRS) is a national service run by NHS England. It collects and securely stores information about people who have been diagnosed with certain conditions, including cancer and some rare diseases.

For this study, we will use information from NDRS, including Cancer Registrations and Quality of Life of Colorectal Cancer Survivors in England.

We will use this information at an individual (record) level, but it will be pseudonymised. This means that personal details such as your name or contact information are removed or replaced with a code, so researchers cannot directly identify you.

The following NHS England National Disease Registration Service (NDRS) Data will be accessed in support of the aims of this research project:

• NDRS Cancer Registrations
• NDRS Quality of Life of Colorectal Cancer Survivors in England

The data being accessed will be record-level pseudonymised data.

The NDRS Cancer Registry data will be minimised as follows:

• Adults aged 18 to 99 
• People diagnosed with specific cancers (Bladder, Breast, Cervix, Colorectal, Hodgkin  Lymphoma, Lung, Melanoma, Ovarian, Prostate, Stomach) 
• Diagnoses between 1 January 2000 and 31 December 2020 
• Dates are limited to month and year only (not exact dates) 
• If someone had more than one tumour in the same area, only the first diagnosis is included

Some of this data may be health data, which is considered special category data and is given extra protection. 

The University of Leicester has engaged in detailed conversations with the NDRS Analytical team to ensure that the data being requested is adequate, relevant and limited to what is necessary.

Why are we processing your data?

The purpose of this research is to improve understanding of cancer outcomes using large-scale, population-level data.

Specifically, the project will develop and apply advanced statistical methods to analyse survival following cancer diagnosis and quality of life among people living with and beyond cancer. The research will examine the impact of cancer screening and early diagnosis, and assess how new and existing treatments influence survival outcomes.

The project will also investigate the impact of the COVID-19 pandemic on cancer diagnosis, treatment and outcomes.

The findings from this research are intended to support clinicians, researchers and healthcare decision-makers in improving cancer care, service planning and patient outcomes.

The University of Leicester’s legal basis for collecting this data is: 

The legal basis for processing your information is that it is necessary for the performance of a task carried out in the public interest, as permitted by the Data Protection Act 2018 and UK GDPR Article 6(1)(e). 

The basis for processing special category data is that it is necessary for scientific research purposes in line with UK GDPR Article 9(2)(j).

Who will my personal information be shared with?

The pseudonymised (no direct identifiers) data is accessed by the research team We do not share the data with other organisations, and it will not be transferred elsewhere once received.

Where did the University of Leicester source my data from?

Your pseudonymised data comes from:

• NHS England’s National Disease Registration Service (NDRS)
• NDRS cancer registry and colorectal PROMs datasets

How long will the University of Leicester keep my data?

We will retain your data only for as long as we need it to meet our purposes, including any relating to legal, accounting, or reporting requirements.   

What rights do I have regarding my data?

You have the right to access, correct, or delete your personal data, to object to or restrict how it is used, to request its transfer to another organisation, and to avoid decisions made solely by automated processes.

Some of the above rights are not absolute. If you want to exercise any of the rights described above, please contact the University’s Information Assurance Team via on the email at the end of this notice. 

We will do our best to respond quickly and within the timeframes set out by data protection law. To help us handle your request and improve our services, we may keep a record of our communications with you.

Opting out of NDRS data 

Some of the data held and used by our Team has been provided by the National Disease Registration Service (NDRS).  If you would like to request your data to be removed from the NDRS registers, please use the following link:  https://digital.nhs.uk/ndrs/patients/opting-out   

Complaints to the University:  

If you are dissatisfied with the way the University have used your information, you should complain to the University’s Information Assurance Team via the email at the end of this notice.

Complaints to the ICO:

If you are not satisfied with the way the University has handled your complaint, you also have the right to raise your concerns with the Information Commissioner’s Office (ICO). The ICO is an independent authority which oversees how personal data is used. Guidance on how to contact the ICO can be found at www.ico.org.uk  

Changes to this privacy notice:

This privacy notice was published in May 2026. If you have any questions about this privacy notice or if you would like to access any of your rights, please contact Information Assurance Services: ias@leicester.ac.uk