ICON Research Database

Introduction

A research database is a structured collection of individual-level personal information, which is stored for potential research purposes beyond the life of a specific research project with defined endpoints. Research purposes in this context refers to analysis of data to answer research questions in multiple projects. More information about research databases can be found on the HRA website.

Purpose

The purpose of the ICON Database is to enable researchers affiliated with the ICON research group (approved ICON data users as stipulated in the ICON Data Management and Security Policy) to be able to conduct research into cancer care and cancer outcomes, with the aim of improving both for all patients.

Data included in the ICON Research Database are provided, directly or indirectly, by the National Cancer Registration and Analysis Service (NCRAS) of Public Health England (PHE) via the Office for Data Release (ODR) and are part of the NCRAS Cancer Analysis System (CAS). This includes the following datasets:

  • Cancer Registry data,
  • Routes to Diagnosis (RtD),
  • Cancer Waiting Times (CwT),
  • Hospital Episodes Statistics (HES),
  • National Radiotherapy Dataset (RTDS),
  • Systemic Anti-Cancer Therapy (SACT),
  • The Diagnostic Imaging Dataset (DID),
  • National Cancer Patient Experience Survey (CPES)
  • ONS Postcode Directories
  • Indices of Multiple Deprivation

All datasets are anonymised by PHE before being released and included in the ICON Database. No personal or identifying information is received or stored by ICON.
Additional data may be added according to the research project aims. If needed, these data will be linked by PHE.

Operation

All projects using the ICON Research Database will be assessed by the London School of Hygiene and Tropical Medicine Ethics committee through the LSHTM Ethics Online portal (LEO) which includes a review of the scientific merit of the research. Following a favourable opinion from the Ethics committee, named collaborators within the ICON group must meet the conditions outlined in the ICON Data Management and Security Policy.

Governance

The Research Database is the responsibility of Professor Bernard Rachet. Prof. Rachet maintains responsibility for the overall governance of the database and its secure use by the ICON data users.

Contact

If you wish to find out more about this research database please get in touch.

Last updated: 14 February 2022