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The national cancer registration system

  • Last modified date:
    28 November 2008

Cancer registration in England is conducted by nine regional registries which collect and collate data on cancers resident in their area, and submit a standard dataset on these registrations to ONS.

The national assembly for Wales is now responsible for cancer registration in Wales.

The registration system in Scotland is coordinated by the information and statistics division (ISD) of the NHS in Scotland.

The national cancer intelligence centre (NCIC) at ONS coordinates the national collation of cancer registration data and carries out a wide range of secondary analysis and research

The United Kingdom association of cancer registries has membership for all registries within the UK and Ireland, together with specialist tumour registries, research organisations and charities.

Cancer registries are essential to the implementation of the NHS Cancer Plan, which aims to improve the quality of care and survival for cancer patients. Reliable population based information on cancer incidence, prevalence and survival rates are needed and cancer registries are the only available source.

Regional cancer registries

The regional cancer registries are responsible for the collection, analysis and dissemination of cancer data for the whole of an assigned region.

Their main priority has been to ensure a uniform process for registering cancers region-wide, which will deliver timely, comparable, high-quality data. Data are collected, stored and released according to all the current requirements relating to data security and confidentiality.

Regional cancer registries across the UK have been collecting population-based cancer data for the last 40 years. Since the early 60s, the regional registries have all supplied data to OPCS (now the Office for National Statistics, or ONS), for the provision of national cancer statistics. All the UK registries collect information each year on every new diagnosis of cancer occurring in their populations. A number of regional registries also contribute data to international publications (eg cancer incidence in five continents) and to european studies (eg EuroCare, EuroCim).

While the nation-wide process of cancer registration has been firmly established for decades, recent developments within the NHS have thrown into sharp relief the need for timely, reliable, comparable cancer data. Cancer registries are actively developing their dialogue with potential users and their role in providing a service which can inform the provision and effectiveness of local cancer services within their populations. Good, comprehensive population-based data are also a rich resource for comparative audits and for research studies.

Uses of cancer registries

Cancer registries undertake a range of public health surveillance and health protection functions. The main functions of cancer registries are :

  • monitoring trends in cancer incidence, prevalence and survival over time and between different areas and social groups
  • evaluating the effectiveness of cancer prevention and screening programmes For example, population based data are required to monitor the effectiveness of the existing national screening programmes for breast and cervical cancer and to inform the design of new programmes, e.g. screening for colorectal and ovarian cancer
  • evaluating the quality and outcomes of cancer care by providing comparative data about treatment patterns and outcomes
  • evaluating the impact of environmental and social factors on cancer risk. For example, cancer registry data are used to investigate possible cancer risks in relation to power lines, landfill sites and mobile phones. Cancer registry data are also used to investigate differences in cancer incidence, survival and access to treatment between social groups and thus contribute to programmes aimed at reducing inequalities in health outcomes
  • supporting investigations into the causes of cancer
  • providing information in support of cancer genetic counselling services for individuals and families at higher risk of developing cancer.

To fulfil these objectives, cancer registries need to collate data on individual patients from multiple sources and over long time periods. These sources include district general hospitals, cancer centres, hospices, private hospitals, cancer screening programmes, other cancer registers, primary care, nursing homes and death certificates. Data are frequently collected from several sources within an individual institution (e.g. pathology departments, medical records and radiotherapy databases.

Registries are asked to link their information with information from other NHS services, notably to support the evaluation of the effectiveness of the national breast and cervical cancer screening programmes. Ensuring such linkages are accurate again requires checking of personal identifiers.

Registries are frequently asked by cancer genetic counselling clinics to confirm cancer diagnoses in family members. The individuals concerned must first provide informed consent to the release of their information for this purpose, but in order to provide such information registries need to have included these names on their databases.

Registries also supply names of patients to bona fide researchers for detailed research projects investigating causes of (or outcomes from) specific cancers. Such studies must first be approved by the appropriate multi-centre (or local) research ethics committees. If patients are approached to provide further information (e.g. regarding occupation or lifestyle), this approach will always be via the patient's general practitioner or hospital consultant, and participation will depend on the patient's fully informed consent.

Geographical studies (e.g studies of cancer risk in people living near landfill sites) can only be undertaken if full postcode is available. Postcode is also required to convert historic data to existing boundaries of , for example, regions, health authorities and primary care organisations.

Data release

All transfers of data to and from cancer registries are strictly controlled and there have been no breaches of confidentiality in the more than 40-year history of the national cancer registration system. Identifiable data releases to third parties are restricted according to strict data release policies.

Publications from cancer registries only present aggregated data; they never identify individual patients.

What do we know as a result of cancer registration?

This is best summarised by listing some examples of what we know as a result of the work of cancer registries and what we will not know in future if cancer registration data become unreliable.

What we know as a result of information obtained from cancer registration:

  • mesothelioma is caused by exposure to asbestos
  • skin melanoma rates have been increasing year on year
  • lymphoma and oral cancer rates are higher in ethnic minorities
  • there is wide variation in how cancer is treated around the country
  • cancer survival for patients living in poor areas is lower than for those living in rich areas
  • cancer survival is lower in the UK than in Europe for most cancers
  • cancer survival in children has improved dramatically over the last 30 years

What we will not know in future if cancer registration becomes unreliable?

  • how many cancers occur each year, and which are the most common
  • if cancer occurrence rates in the UK are higher or lower than in other countries
  • if cancer survival rates in the UK have caught up with other european countries
  • if inequalities in cancer treatment or survival between rich and poor have been abolished
  • if cancer screening programmes are effective
  • if people living near landfill sites or power lines have increased cancer risk
  • whether some late deaths in childhood cancer survivors are related to earlier treatments
  • if the risk of developing certain cancers is elevated in some occupational groups

English cancer registries

 

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