About

The Australian Government is establishing a National Occupational Respiratory Disease Registry (the National Registry) to record the nature and extent of occupational respiratory diseases in Australia. The aim of the National Registry is to capture and share data on the incidence of occupational respiratory diseases, causative exposures and respiratory health data to aid the detection of new and emerging threats to worker’s respiratory health, inform incidence trends, and assist in targeting and monitoring the effectiveness of interventions and prevention strategies.

Update on progress

The department has been working with stakeholders to build and bring the National Occupational Respiratory Disease Registry into operation.

The implementation of the National Registry is subject to the passage of supporting legislation through parliament.

The department is currently assessing stakeholder feedback on the draft legislation which was released in November 2022. The revised legislation is expected to be introduced in the second half of 2023.

A National Registry Build Advisory Group has been established to provide advice during the build of the National Registry to ensure it delivers the best possible client experience and delivers on its intended purposes.

The Advisory Group membership includes representatives from:

• Royal Australasian College of Physicians (RACP)
• Australian and New Zealand Society of Occupational Medicine Inc (ANZSOM)
• Thoracic Society of Australia and New Zealand (TSANZ)
• Australian Institute of Occupational Hygienists (AIOH)
• Australasian Faculty of Occupational and Environmental Medicine (AFOEM)
• Respiratory researchers
• State and territory government agencies representing Health and Work Health and Safety.

Find out more:

If you would like to find out more about the National Registry and keep up to date with its progress, email enquiriesNORDR@health.gov.au

Background

In 2019, the National Dust Disease Taskforce was established to develop a national approach to the prevention, early identification, control, and management of occupational dust diseases including silicosis.

One of the recommendations of the Taskforce was to establish the National Occupational Respiratory Disease Registry to understand the prevalence of occupationally caused respiratory diseases and to help reduce further worker exposure. Read the Final Report of the National Dust Disease Taskforce.

Registry scope and operation

As defined by the Taskforce, the intended scope of the National Registry is to capture information on occupationally caused respiratory diseases in Australia.

Respiratory and occupational physicians will be required to notify all diagnoses of silicosis through the National Registry. Physicians will also be able to record other occupational respiratory diseases in the National Registry. The voluntary notification of other occupationally caused respiratory diseases will be critical to the early identification of new and emerging occupational respiratory risks.

Over time, it is possible that other occupationally caused respiratory diseases may change from being voluntary to notify to becoming mandatory to notify. This decision process to make a disease mandatory to notify would be taken in consultation with relevant peak medical bodies and the states and territories.

Registry vision, mission and purposes

• Vision (what we aspire to): A National Occupational Respiratory Disease Registry will support the elimination of preventable occupational respiratory diseases by facilitating earlier detection, intervention and prevention activities.

• Mission (how will achieve vision): A National Occupational Respiratory Disease Registry, with an initial focus on silicosis, will capture and share data on the incidence of occupational respiratory diseases, causative exposures and respiratory health data to aid the detection of new and emerging threats to worker’s respiratory health, inform incidence trends, and assist in targeting and monitoring the effectiveness of interventions and prevention strategies.

• Purposes (the aim, intent)
  The purposes of the National Registry include
• understand the nature and extent of occupationally caused/contributed respiratory diseases in Australia and their longitudinal trends
• support the identification of exposures, and the industries, occupations, job tasks and workplaces associated with risk of developing occupational respiratory diseases to enable the application of more timely and targeted interventions and prevention activities to reduce further worker exposure and disease
• monitoring the quality and effectiveness of policy and regulatory arrangements, in relation to occupational respiratory diseases to inform and enhance policy development, programs and decision‑making relating to the prevention of occupational respiratory diseases
• planning, delivering and promoting healthcare and associated services in relation to occupational respiratory diseases
• providing healthcare providers with access to information included in the National Registry in relation to an individual who has been diagnosed with an occupational respiratory disease for the purpose of providing healthcare to the individual in relation to the disease
• to support research into current and emerging occupational respiratory diseases to understand their causes, incidence, prevalence, nature extent and trends
• to enable the identification of individuals for inclusion in clinical trials/observations.

Use of Registry information

Information recorded in the National Registry will be shared with relevant state and territory health, and work health and safety agencies so they can understand the prevalence of occupationally caused respiratory diseases in their jurisdiction. This data can then be used to inform any actions required to reduce further worker exposure.

The information contained in the National Registry will also be available to ethics committee approved research projects to support research into occupational respiratory diseases relating to their risk factors, incidence, prevalence, nature, extent, trends and what can be done to reduce the risks to workers.

Existing state registers

The National Registry has been designed with representatives from each state and territory to align the data items and diseases captured in existing registers. The National Registry would not legislatively override existing state occupational disease registers where there is one already in place. The National Registry will align existing state registers to ensure a smooth transition for notifying physicians.