If you’ve been diagnosed with silicosis, your treating doctor is now required by law to report your diagnosis to Australia’s National Occupational Respiratory Disease Registry, commonly known as NORDR. This may be the first you’ve heard of it. You might be wondering what information is being collected, who can see it, and what it actually means for your care.
This post explains what NORDR is, why it exists, what happens with your information, and whether there is anything you need to do.
What is the National Occupational Respiratory Disease Registry?
NORDR is a national database, established under the National Occupational Respiratory Disease Registry Act 2023, that records cases of occupational respiratory diseases, meaning those caused or worsened by exposure to workplace hazards like silica dust, asbestos fibres, gases, or fumes.
The registry is managed by the Australian Centre for Disease Control (CDC), part of the Australian Government’s Department of Health and Aged Care. It launched on 22 May 2024 and was one of the key recommendations of the National Dust Disease Taskforce, which carried out a major independent review of occupational respiratory disease in Australia in 2022.
While silicosis is currently the only disease that is mandatorily notifiable to the national registry in all states and territories, all other occupational respiratory diseases can (and should) be notified. In Queensland, a broader range of occupational respiratory diseases, including pneumoconiosis, are also required to be reported.
Why Does the Registry Exist?
For decades, Australia lacked reliable national data on the scale and spread of occupational respiratory diseases. Workers were getting sick, and in the case of silicosis, the numbers were rising sharply, but the full picture wasn’t visible to governments or health authorities.
NORDR changes that. By collecting consistent, national data on diagnosed cases, the registry aims to:
- detect new and emerging threats to the health of workers before they become epidemics
- understand which industries, occupations and job tasks are putting people at greatest risk
- target early intervention and prevention activities where they’re most needed
- support planning and delivery of health care services for people with occupational respiratory disease
- inform research into prevention, treatment and outcomes
Every diagnosis notified to the registry contributes to this picture. The data record what has already happened and helps determine where resources and action need to go next.
What does this mean if you've been diagnosed?
A silicosis diagnosis brings a lot to deal with all at once. Understanding the registry, and your role in it, is one less thing to worry about.
Here is what you need to know.
Your doctor will notify the registry on your behalf
You don’t need to register yourself. If your silicosis was diagnosed on or after 22 May 2024, your treating occupational or respiratory physician is legally required to notify the registry. This happens through the physician’s secure online portal. There is nothing you need to action.
If your diagnosis predates 22 May 2024, reporting to NORDR is voluntary, but your doctor may still choose to notify, with your consent.
Some information is collected without your consent, but additional information requires it
There are two levels of information in NORDR.
The first is called minimum notification information. For silicosis diagnosed after 22 May 2024, this must be reported by your physician regardless of whether you consent. It includes your name and contact details, details of your disease, and information about the exposure that caused it. No consent is required for this because reporting is mandatory under the Act.
The second is additional notification information. This includes your medical test results, your occupational history of exposure, your height and weight, your smoking history, and your employment status. Your physician needs your consent before collecting and adding this information to the registry.
Your consent to share additional information may be given in writing (by signing the consent form your doctor provides) or verbally. You can withdraw or update your consent at any time by asking your physician to update your record, or by contacting the National Registry directly.
Your information is protected by law
All information held in NORDR is protected under the Privacy Act 1988 (Cth) and the Australian Privacy Principles (APPs). The registry is managed in accordance with these laws, which govern how your personal information is collected, used, stored and shared.
Your minimum notification information (your name and contact details, disease details and exposure history) is shared with relevant state and territory government authorities. This is done specifically to help identify workplaces and industries at risk, and to support action to prevent further worker exposure. State and territory authorities do not see your additional information, such as your medical test results or lifestyle information.
Your information will not be shared with researchers who can identify you without your separate consent. If the CDC does approach you to participate in research, you are free to decline.
You have the right to access the information held about you in the registry, and to have it corrected if it is inaccurate. To request access or a correction, contact your physician or reach the NORDR helpdesk directly at 1300 293 202 or helpdesk@NORDR.au.
Why your diagnosis matters to other workers
Silicosis has no cure. The best outcome for future workers depends on preventing the disease before it starts, and that requires knowing where it’s happening.
Every case recorded in NORDR adds to the evidence base that governments, health authorities and workplace safety regulators use to act. Up to 600,000 Australians are exposed to silica dust in their work each year. The industries most affected, including construction, mining, tunnelling and engineered stone fabrication, have not always had robust systems for tracking who gets sick and why.
When your diagnosis is recorded in the registry, it contributes to a national picture that can drive real change: stronger safety standards, better dust controls, earlier screening programs, and more resources for the people who need them. Your experience, painful as it is, has the potential to protect someone else from the same fate.
How NORDR differs from other silicosis-related registries
It’s worth clarifying, because there is sometimes confusion about this. NORDR is not the same as the New South Wales Silica Worker Register, which was established in 2025 to track workers who are currently at risk of silica exposure in NSW workplaces. That register is aimed at monitoring exposure in workers who have not yet been diagnosed.
NORDR is a national registry for people who have already been diagnosed with an occupational respiratory disease, including silicosis. It operates across all states and territories and is administered by the federal government.
If you have been diagnosed with silicosis, NORDR is the registry relevant to you.
Frequently Asked Questions
Do I need to do anything to be included in NORDR?
No. If your diagnosis was made on or after 22 May 2024, your physician is required to notify the registry. You don’t need to take any action for your minimum notification information to be recorded.
How do I know if my diagnosis has been reported?
Ask your treating doctor. They can confirm whether they have notified the registry and what information has been included. If you have questions directly for the registry, contact the NORDR helpdesk on 1300 293 202 or at helpdesk@NORDR.au.
Can I opt out?
For silicosis diagnosed after 22 May 2024, notification of your minimum information to the registry is mandatory. However, your consent is required for any additional information to be included, and you can withdraw or update that consent at any time.
Who will see my information?
Your minimum notification information is shared with relevant state and territory health and workplace safety authorities. Additional information you consent to share may be accessed by your treating physicians, and by approved researchers if you have given your separate consent to that. Your information is held securely and governed by the Privacy Act 1988 (Cth).
My diagnosis was before May 2024. Does the registry apply to me?
Reporting is voluntary for cases diagnosed before 22 May 2024. Your physician can choose to notify the registry with your consent using Consent Form B. Many physicians and patients have chosen to do so in order to support the broader national picture.
Will my information be used for research?
The CDC may contact you to ask whether you consent to your information being shared with researchers working on occupational respiratory disease. You are under no obligation to agree. If you do consent, only de-identified information will be shared unless the research genuinely requires identifying details. Your workplace and physician details will never be shared with researchers.
A diagnosis is the start of something, not the end
A silicosis diagnosis is serious. While there is no cure, there is a great deal that can be done: managing symptoms, protecting lung function, understanding your legal and financial entitlements, and connecting with the support available to you.
The National Occupational Respiratory Disease Registry is one piece of a larger system designed to respond to the silicosis crisis in Australia. It exists because of the people who came before you. It will protect the workers who come after.
Take the next step.
If you’ve been diagnosed with silicosis and want to understand what support is available to you, visit the Living with Silicosis section of the Silicosis Support Hub, or reach out to our Support Nurse, Jenny Coles, who can talk you through your options and help you find the right care.
For more information about NORDR, visit cdc.gov.au/topics/nordr.
