What are clinical registries?

Clinical registries are databases that systematically collect health-related information within an overall governance and management structure on individuals who are:

  • treated with a particular surgical procedure, device or drug, eg. joint replacement;
  • diagnosed with a particular illness, eg. stroke; or
  • managed via a specific healthcare resource, eg. treated in an intensive care unit.

The Australian Commission on Safety and Quality in Health Care has developed key documents regarding the governance, operation and technical requirements of clinical quality registries: Operating Standards and Framework.

Types of clinical registries

Clinical quality registries

The primary purpose of a clinical quality registry is to monitor outcomes and report on quality of care. Quality indicators collected by clinical registries assess whether care is safe and effective and delivered in a timely and appropriate manner and report this back to institutions and/or clinicians. Clinical registries may monitor quality of care within specific areas of the health service, such as in Intensive care or the Emergency Department or may be targeted at monitoring defined diseases or conditions.

Condition / Disease registries

The primary purpose of a condition / disease registry is to collect diagnostic details on patients with specific diseases or conditions. Examples of these registries include those monitoring the incidence of cancer, or those monitoring incidence, treatment and outcomes of patients with cystic fibrosis. If a condition / disease registry collects outcome data and reports quality indicators back to institutions and / or clinicians it would also be considered a clinical registry.

Drug / Device / Product registries

The primary purpose of a drug / device / product registry is to monitor the medium to long-term safety of devices, drugs or products such as blood. Examples of these registries include those monitoring safety of implantable devices such as pacemakers or breast implants. As with condition/disease registries, drug/device/product registries may also be considered clinical registries if they collect and report quality indicators back to institutions and/or clinicians.