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Disease registers

Introduction

Learning objectives: You will learn about cancer registers, as well as other disease registers.

Please read the resource text below.

Resource text

Cancer registries

For example see the Thames Cancer Registry.

In the United Kingdom, there are 12 registries (geographically defined) and each contributes to the National Cancer Registry overseen by the Office for National Statistics. Cancer registries were set up to collate new cases of cancer and use this information to produce statistics about cancer incidence, prevalence, survival and mortality. In recent years, the work of cancer registries has expanded from the monitoring of cancer occurrence to include the analysis of different aspects of cancer prevention, treatment outcomes and care.

Uses

  • patient follow up.
  • auditing treatment, comparing with other treatment outcomes.
  • evaluation of services.
  • studies of causation.
  • health service planning.

Strengths

  • very rich, detailed source of information - patient identifiable information which is longitudinal, i.e. updated over time.

Weaknesses

  • expensive to run - updating the registry is laborious.
  • confidentiality issues
  • assessing completeness/under-coverage is not straightforward [Brenner et al]. More recently, more rigorous methods (read from page 5) have been developed to assess completeness.
  • completeness of ethnicity could be improved.

Other examples of disease registries

  • congenital anomalies, e.g. in South West England
  • industrial diseases
  • diabetes, e.g. in Australia

Notifications of congenital anomalies are not a statutory requirement in England and Wales, but merely voluntary. The national system was established in response to the thalidomide disaster. They can be notified at any time and through various routes. The data do not include abortions undertaken for fetal anomaly, although data are also held on these. They do not include cerebral palsy.

Issues to consider when establishing a registry

  • clear case definition
  • system for reporting new events
  • what is to be reported
  • what is to be stored
  • system for handling enquiries
  • who will undertake analyses
  • confidentiality and ethical issues
  • maintaining quality
  • maintaining funding over time

References

    H Brenner, C Stegmaier, and H Ziegler, Estimating completeness of cancer registration: an empirical evaluation of the two source capture-recapture approach in Germany. J Epidemiol Community Health 1995; 49: 426-430.