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Disease Registry

Environmental Health

  1. Ross Darnell

Published Online: 15 JAN 2013

DOI: 10.1002/9780470057339.vad027.pub2

Encyclopedia of Environmetrics

Encyclopedia of Environmetrics

How to Cite

Darnell, R. 2013. Disease Registry . Encyclopedia of Environmetrics. 2.

Author Information

  1. CSIRO Mathematics, Informatics and Statistics, Brisbane, Queensland, Australia

Publication History

  1. Published Online: 15 JAN 2013

Abstract

A disease registry defines a process that manages registers, which comprise cases of a particular disease that have occurred in a population. The registry may include demographic information about the cases (e.g., age, gender, and place of residence), dates of disease diagnosis, and perhaps additional information such as dates of death, or exposure and risk factor information. Registers are multipurpose being used to improve patient care, reviewing of patients with chronic illness, public health reporting, surveillance of diseases within a population, planning and provision of health care, and research. There is a tension between the increasing demands for personal autonomy and the need for society to recover as much information as possible to learn how best to control disease. There is a real need for maintaining confidentiality of individual health data and for informed consent before these data are used for research.

Keywords:

  • public health reporting;
  • rare disease;
  • notifiable diseases;
  • record linking;
  • informed consent