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Cancer Intelligence

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Information and statistics service

Trent Cancer Registry provides an information and data analysis service. This is available to Cancer Networks, Government Offices, Acute Trusts, PCTs, the Office for National Statistics and other health organisations, as well as academic researchers, charities, the media and members of the public.

The type of data and analyses we can provide include:

  • for different geographical levels, numbers of cancer cases and deaths, incidence rates, mortality rates and survival, including trends over time
  • listings of patients for audit or to update oncology databases (to authorised recipients only)
  • data for research projects (with full ethics and NIGB (formerly PIAG) approval only)
  • investigations into possible cancer clusters (in collaboration with PCTs).

A range of data is available on our website and via the National Cancer Information Service, (to authorised users) but we can also respond to specific data requests.

Data available on the website

Visit the 'Cancer Data' section of the website for:

  • a summary of the most common cancers diagnosed in people in the Trent Cancer Registry catchment population
  • incidence, mortality and survival data for selected cancer sites, for the East Midlands and South Yorkshire areas
  • PCT cancer factsheets providing a concise summary of the most up-to-date cancer incidence, mortality and survival figures for each of the 13 PCTs in the East Midlands and South Yorkshire, along comparative Cancer Network data

Publications

Links to recently published reports, references to research papers and oral and poster presentation abstracts are available in the Publications Section.

Recent and planned publications include:

  • A suite of CIA reports covering all Trent Cancer Registry Cancer Networks (LNR, Mid Trent, North Trent and Derby-Burton) (March 2009)
  • PCT cancer factsheets (September 2008)
  • Cancer Inequalities in the East Midlands (October 2007)
  • Clinical Information Analysis (CIA): Surgical, Clinical and Medical Oncology for Leicestershire, Northamptonshire & Rutland (LNR) and Thames Valley Cancer Networks, 2005-06 (May 2007)

Audit

Trent Cancer Registry collaborated with both the Oxford Cancer Intelligence Unit (OCIU) and the Welsh Cancer Intelligence & Surveillance Unit (WCISU) to provide the analysis for the fourth national audit annual report on the management of head and neck cancer. This report provides a national assessment of outcomes and a tool to improve standards of care, identifying areas of good practice to teams delivering head and neck cancer care. DAHNO (Data for Head and Neck Oncology) is part of the National Clinical Audit Support Programme (NCASP).

National Cancer Information Service (NCIS)

The NCIS is a web-based analytical tool available to health professionals within the NHS via a secure NHS Net connection.  The NCIS is populated with cancer registration data collected by all UK Cancer Registries, and mortality data provided by the Office for National Statistics (ONS). The types of analyses available include:

  • Incidence trends (numbers, crude and age-standardised rates), 1985 to 2007
  • Mortality trends (numbers, crude and age-standardised rates), 1985 to 2008
  • Survival trends (numbers and relative survival percentages), 1985 to 2007 with follow-up to 2008
  • Individual and common groupings of all cancer sites
  • All current Government Office Regions, Strategic Health Authorities, Cancer Networks, Primary Care Trusts and local authorities, as well as England and UK totals
  • Age-sex profiles

For further details about the NCIS download a copy of the NCIS flyer.

To apply for access, please complete and return a copy of the UKACR NCIS User Account Application Form. Forms can be completed electronically but should be printed off for applicant and authorising signatures and returned to Trent Cancer Registry by post (details on the form). Following authorisation by the Registry, access will be granted, if eligible.

Patient identifiable or potentially identifiable data

Identifiable patient data include any of the following: name, address, postcode, date of birth, date or cause of death, NHS number, hospital number. As a general rule, the following categories should be regarded as being potentially identifiable data:

  • Individual records even if they do not include variables, such as names, full postcodes, and dates of birth which would make them obviously identifiable
  • Tabular data, based on small geographic areas, with cell counts of fewer than five cases/events (or where counts of less than five can be inferred by simple arithmetic)
  • Tabular data containing cells that have underlying population denominators of less than 1,000.

Note: Data at this level is only released in accordance with national UKACR policies on confidentiality and the Trent Cancer Registry Security and Data Protection Policy and Security and Data Confidentiality Operational Procedures.

How to make a data request

If you are unable to find the information you need on our website, publications, NCIS or elsewhere, please contact us with your specific request. We aim to process data requests within 20 working days and would ask you to bear this in mind when requesting data. However, we will endeavour to meet your local deadlines where practically possible.

To make a request, please complete and return a copy of one of our data request forms:

  • Summary request form for aggregated data that is not patient identifiable or potentially identifiable
  • Patient-specific request form for data that is patient identifiable or potentially identifiable. Release of data at this level is restricted, please see above for further information.

If you need further help or advice before submitting your request please contact us or by telephone (0114 2263560).

Cancer clusters

Trent Cancer Registry offers a service to PCTs for the initial evaluation of potential cancer clusters and we are willing to advise and collaborate in more detailed investigations should this be justified. Initial contact should be to the Registry's Director, or Head of Cancer Analysis, (telephone: 0114 2263560).

Members of the public who are concerned are advised to contact the Director of Public Health for their own Primary Care Trust.