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Cancer Data Set


Following the publication of the Cancer Reform Strategy (2007) and review of the current data sets, the Data Sets Service is working with the National Cancer Intelligence Network (NCIN) to revise the data sets. This will ensure that the data sets meet the needs of the current service and policy requirements.

"More than one in three people in England will develop Cancer during their lives. One in four will die of it...So better, prevention, detection and treatment of cancer matters to us all"

NHS Cancer Plan

A project board has been established to oversee the review of the National Cancer Data Set (NCDS). The purpose of the project is for the data set to be approved as an operational standard for the NHS. The work, commencing in June 2009, includes the necessary elements to support a submission to the Information Standards Board for Health and Social Care (ISB). Approval by the ISB will enable the data set to be mandated as a collection in the NHS. This will be notified to the NHS and system suppliers via the publication of a Data Set Change Notice (DSCN).

It is anticipated that the project will complete its work in April 2012, with data set collection being mandatory from September 2012.

Current information about the Cancer Dataset Project is available on the NCIN website (external)


The NCDS "core" was approved in December 2002 as a Strategic Standard (now classed as a Fundamental Standard). The approval of this "core" data set was followed by the approval of the appendices for Lung, Breast, Head & Neck, Colorectal, Upper GI, Gynaecology, Skin, Brain, Sarcoma and Urology. The requirements for surgical Voice Restoration, Haematology and Thyroid appendices were also approved by ISB.

The National Cancer Plan was published by the Department of Health in September 2000 and presents the government's strategy for investment and reform across the NHS, giving cancer services high priority.

NCIN are continuing with the project to review the NCDS to ensure that the collection is up-to-date and meets current service and policy requirements. The project team is working with the 12 NCIN Site Specific Clinical Reference Groups to review the requirements of the collection. This project work will also include reviewing the cancer registration data set. The data items identified by the NCIN Site Specific Clinical Reference Groups and the reviewed cancer registration data set will be collated into one data set which will be taken forward for approval as an NHS information standard. In order to get this approval, the data set will be subject to operational testing to prove that it can be collected.

Key personnel

  • Project Executive: Chris Carrigan, NCIN
  • User Representatives:
    • Jennifer Benjamin, Department of Health
    • Kath Nuttall, Lancashire & South Cumbria Cancer Network
    • Mick Peake Clinical Lead, NCIN
    • Di Riley, NCIN
    • Jem Rashbass, Eastern Cancer Registry & Intelligence Centre
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