Resources
National Occupational Respiratory Disease Registry brochure
Infographic
This brochure contains key information regarding the National Registry, including types of data collected, purpose of the National Registry, physician obligations, and contact details for the physician help desk. This brochure contains links to the National Registry website and the Physician Portal.
National Occupational Respiratory Disease Registry – Annual Report 2024
Report
The 2024 Annual Report gives an overview of the National Registry and summarises information notified to the National Registry in the first three months of operation and general observations. This Annual Report includes data on mandatory and voluntary notifications, exposure, occupation.
National Occupational Respiratory Disease Registry postcard
Infographic
This postcard provides basic information on the National Registry such as the National Registry’s purpose, mandatory and voluntary notifications, and a link to the National Registry website for further information.
Australian Government response to the Inquiry into childhood rheumatic diseases – Interim Report
Government response to inquiry
This is the government response to the interim report on Inquiry into childhood rheumatic diseases.
Newborn bloodspot screening variant fact sheet
Fact sheet
The list of variants for sickle cell disease, beta thalassemia and other hemoglobinopathies are captured in this resource.
Life Saving Drugs Program – Mucopolysaccharidosis type IVA (MPS IVA) – Initial application
Form
Treating physicians use this application form to apply for a patient to access LSDP medication for MPS IVA for the first time, or after a break.
Life Saving Drugs Program – Mucopolysaccharidosis type I (MPS I) – Patient test results spreadsheet
Dataset
Specialists use this spreadsheet to report their patient's test results when reapplying for treatment under the Life Saving Drugs Program.
Life Saving Drugs Program – Pompe disease – Initial application
Form
Treating physicians use this application form to apply for a patient to access LSDP medication for Pompe disease for the first time, or after a break.
Life Saving Drugs Program – Hereditary tyrosinaemia (type 1) – Initial application
Form
Treating physicians use this application form to apply for a patient to access LSDP medication for hereditary tyrosinaemia (type 1) for the first time, or after a break.
Life Saving Drugs Program – Mucopolysaccharidosis type VI (MPS VI) – Guidelines
Guideline
These guidelines contain the general, initial and ongoing eligibility requirements to access treatment for mucopolysaccharidosis type VI (MPS VI) under the Life Saving Drugs Program.
Life Saving Drugs Program – Mucopolysaccharidosis type IVA (MPS IVA) – Guidelines
Guideline
These guidelines contain the general, initial and ongoing eligibility requirements to access treatment for mucopolysaccharidosis type IVA (MPS IVA) under the Life Saving Drugs Program.
Life Saving Drugs Program – Gaucher disease (type 1) – Initial application
Form
Treating physicians use this application form to apply for a patient to access LSDP medication for Gaucher disease for the first time, or after a break.
Life Saving Drugs Program – Mucopolysaccharidosis type I (MPS I) – Guidelines
Guideline
These guidelines contain the general, initial and ongoing eligibility requirements to access treatment for mucopolysaccharidosis type I (MPS I) under the Life Saving Drugs Program.
Life Saving Drugs Program – Mucopolysaccharidosis type II (MPS II) – Guidelines
Guideline
These guidelines contain the general, initial and ongoing eligibility requirements to access treatment for mucopolysaccharidosis type II (MPS II) under the Life Saving Drugs Program.
Life Saving Drugs Program – Late-Infantile Onset Batten disease (CLN2 disease) – Patient test results spreadsheet
Dataset
Specialists use this spreadsheet to report their patient's test results when reapplying for treatment under the Life Saving Drugs Program.
Life Saving Drugs Program – Mucopolysaccharidosis type VI (MPS VI) – Initial application
Form
Treating physicians use this application form to apply for a patient to access LSDP medication for MPS VI for the first time, or after a break.
Life Saving Drugs Program – Gaucher disease (type 1) – Guidelines
Guideline
These guidelines contain the general, initial and ongoing eligibility requirements to access certain medications for Gaucher disease (type 1) under the Life Saving Drugs Program.
Life Saving Drugs Program – Mucopolysaccharidosis type II (MPS II) – Initial application
Form
Treating physicians use this application form to apply for a patient to access LSDP medication for MPS II for the first time, or after a break.
Life Saving Drugs Program – Mucopolysaccharidosis type I (MPS I) – Initial application
Form
Treating physicians use this application form to apply for a patient to access LSDP medication for MPS I for the first time, or after a break.
Life Saving Drugs Program – Mucopolysaccharidosis type IVA (MPS IVA) – Patient test results spreadsheet
Dataset
Specialists use this spreadsheet to report their patient's test results when reapplying for treatment under the Life Saving Drugs Program.
Life Saving Drugs Program – Hereditary tyrosinaemia (type 1) – Guidelines
Guideline
These guidelines contain the general, initial and ongoing eligibility requirements to access treatment for hereditary tyrosinaemia (type 1) under the Life Saving Drugs Program.
Life Saving Drugs Program – Late infantile Batten disease (CLN2 disease) – Initial application
Form
Treating physicians use this application form to apply for a patient to access LSDP medication for Batten disease for the first time, or after a break.
Life Saving Drugs Program – Mucopolysaccharidosis type VI (MPS VI) – Patient test results spreadsheet
Dataset
Specialists use this spreadsheet to report their patient's test results when reapplying for treatment under the Life Saving Drugs Program.
Life Saving Drugs Program – Pompe disease – Patient test results spreadsheets
Dataset
Treating physicians use the relevant spreadsheet to report their patient's test results when reapplying for treatment under the Life Saving Drugs Program.
Life Saving Drugs Program – Late infantile Batten disease (CLN2)
Guideline
These guidelines contain the general, initial and ongoing eligibility requirements to access treatment for late-infantile onset Batten disease under the Life Saving Drugs Program.
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