Neurological conditions in Australia:
Huntington's disease in Australia
Web article
Last updated:
Topic: Neurological conditions
Citation
AIHW (Australian Institute of Health and Welfare) (2025) Huntington's disease in Australia, AIHW, Australian Government, accessed 4 June 2026.
This article is part of Neurological conditions in Australia
- Cerebral palsy in Australia
- Epilepsy in Australia
- Functional neurological disorder in Australia
- Guillain-Barré syndrome in Australia
- Huntington's disease in Australia This page
- Migraine and headaches in Australia
- Motor neurone disease in Australia
- Multiple sclerosis in Australia
- Myalgic encephalomyelitis / chronic fatigue syndrome in Australia
- Myasthenia gravis in Australia
- Parkinson's disease in Australia
Huntington’s disease is an inherited condition where a child with one parent who has the mutated gene has a 50% chance of inheriting the gene and developing the disease (Brain Foundation 2025). Symptoms can begin at any age but often appear in middle age. Huntington’s disease is associated with cognitive and emotional symptoms as well as physical movement related symptoms (Healthdirect 2023), including:
- difficulty performing complex tasks
- impaired concentration, attention and memory
- impulsive behaviour
- depression and apathy
- irritability
- uncontrolled movements
- slowed movements and thinking.
Different symptoms combine to produce progressive declines in everyday functioning (for a representative and up to date list of symptoms, see Considine et al. 2023). There are currently no treatments available that can slow or prevent the disease. Treatment is aimed at easing symptoms, providing support and maintaining quality of life.
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About 2,400 Australians were estimated to be living with Huntington’s disease in 2024.
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The average length of stay for hospitalisations due to Huntington’s disease was 32 days in 2023-24.
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There were 1,100 registered NDIS plans for people living with Huntington’s disease as of March 2025.
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The mean age at death due to Huntington’s disease was 65 years old.
This report presents both crude and age-standardised rates, where available.
Crude rates are based on unadjusted data and indicate whether there is a difference between populations without accounting for differences in the age structures of the populations.
Age-standardised rates are based on data that are adjusted to account for differences in the age structures of the populations.
Therefore, a difference between 2 populations in crude rates indicates that the rate differs between them. The differences may be due to any number of factors, including different age structures of the populations. In contrast, a difference between 2 populations in age-standardised rates indicates that the rate differs between them but that this difference is not due to different age-structures.
For example, a difference in the prevalence rate between males and females indicates that prevalence differs between them, and this difference in prevalence could be due to any number of risk factors, including age. A difference in the age-standardised prevalence rate between males and females indicates that prevalence differs between them and, furthermore, that this difference in prevalence is not due to age.
For more details about rate calculations see the Technical notes in Neurological conditions in Australia.
For interactive visualisations on hospitalisations and mortality for Huntington’s disease, see Figure 2 and Figure 6, respectively, in the Neurological Conditions in Australia report. Change the toggles in the visualisations from “all neurological conditions” to “Huntington’s disease”.
For downloadable data tables, see Data section of this article.
How common is Huntington's disease in Australia?
The best current estimate for how common Huntington’s disease is in Australia comes from non-Australian data sources, including a systematic review and meta-analysis of studies published between 2010 and 2022 (Medina et al. 2022). The research report included a meta-analysis of studies estimating the prevalence of Huntington’s disease in North America, which we can use to extrapolate to Australia. The meta-analysis suggests that the prevalence of Huntington’s disease is 8.9 per 100,000 population.
Therefore, based on the Australian estimated resident population (ERP) as at 30 June 2024, about 2,400 in Australia are living with Huntington’s disease.
Socioeconomic and remoteness areas
There were no reliable sources to estimate the prevalence of Huntington’s disease in Australia across different socioeconomic and remoteness areas.
Trends over time
There were no comparable sources to determine prevalence trends over time.
The systematic review conducted by Medina et al. (2022) did not identify any studies estimating the prevalence of Huntington’s disease in Australia. The meta-analysis, therefore, did not include any data inputs from Australia.
However, Medina et al. (2022) is the most recent systematic review and meta-analysis of research published on the prevalence of Huntington’s disease and the analysis of studies including North America specifically may provide the best current estimate of prevalence for Australia. This is because Huntington’s disease is genetic and, out of the regions included in Medina et al.’s (2022) analyses, North America is the closest to Australia in relevant demographic characteristics.
With no other, more recent estimates using data from Australia, Medina et al. (2022) is the best current source for the prevalence of Huntington’s disease in Australia.
However, national registry initiatives (for example, Map-HD) could improve prevalence estimates for Australia.
Hospitalisations
Based on the National Hospital Morbidity Database (NHMD), in 2023–24:
- there were 290 hospitalisations (1 per 100,000 population, crude and age-standardised rates were the same) where Huntington’s disease was listed as the principal diagnosis, and a further 540 hospitalisations as an additional diagnosis
- hospitalisations due to Huntington’s disease (principal diagnosis) were 52% females and 48% males, with a rate equivalent to 1 per 100,000 population for both sexes (crude and age-standardised rates were the same)
- the median age of people hospitalised due to Huntington’s disease was 57 years
- the average length of stay for hospitalisations due to Huntington’s disease was 32 days.
Socioeconomic and remoteness areas
In 2023–24:
- the highest 20% of socioeconomic areas had the lowest rate of hospitalisations (0.4 per 100,000 population, crude and age-standardised rates were the same) due to Huntington’s disease but the longest average length of stay (64 days); compared with between 0.7 and 1.8 hospitalisations per 100,000 population (0.7 and 1.5 per 100,000 population, age-standardised) for the second highest 20%, middle 20%, second lowest 20% and lowest 20% of socioeconomic areas, which had an average length of stay between 12 and 52 days
- where Huntington’s disease was a principal diagnosis, the crude hospitalisation rate was lowest in inner regional areas (0.6 hospitalisations per 100,000 population) and highest in major cities (1.2 hospitalisations per 100,000 population) – hospitalisations were too low in remote and very remote areas to calculate reliable age-standardised rates for meaningful comparison.
Further data tables on socioeconomic and remoteness figures are available for download under the Data section of this article.
Trends over time
From 2013–14 to 2023–24, after adjusting for different population age structures over time, Huntington’s disease hospitalisations (principal diagnosis) increased slightly from 0.9 to 1.0 hospitalisations per 100,000 population; the average length of stay also increased very slightly from 30 to 32 days.
Information on procedures in the National Hospital Morbidity Database (NHMD) is reported using the Australian Classification of Health Interventions (ACHI) which classifies surgical operations, procedures and other types of interventions performed for the purpose of investigating and/or remedying health state.
In 2023–24, there were 1,070 procedures for hospitalisations with a principal diagnosis of Huntington’s disease, equating to around 3.7 procedures per hospitalisation. Over three quarters of these were generalised allied health interventions, 3.9% were other assessment, consultation, interview, examination or evaluation, 3.4% were assessment of personal care and other activities of independence and 3% were cerebral anaesthesia.
For more information on surgeries and intervention types, see Surgery and other interventions.
Emergency department presentations
The National Non-admitted Patient Emergency Department Care Database (NAPEDC) uses the Principal Diagnosis Short List (EPD Short List), a set of codes and medical terms derived from ICD-10-AM classifications.
Emergency department (ED) presentations for Huntington’s disease are not recorded separately but are included within the broader “spinal muscular ataxia and systemic atrophies” category, which also includes motor neuron disease, among other conditions. As a result, it is not possible to determine or report the specific number of ED presentations for Huntington’s disease.
Health-system costs
Estimates for health-system costs relating to Huntington’s disease cannot be reported from Health system spending on disease and injury in Australia 2023–24 report (AIHW 2025) as Huntington’s disease is not one of the identified Australian Burden of Disease conditions. Expenditure for Huntington’s disease is included within the expenditure for “other neurological conditions”.
Burden of Disease
The Australian Burden of Disease Study did not provide separate estimates for Huntington’s disease.
NDIS and aged care
As of 31 March 2025, there were 1,100 registered NDIS plans for people living with Huntington’s disease that was identified as the primary condition affecting care (NDIS 2025).
These numbers represent people who are eligible for NDIS funding based on evidence required by the National Disability Insurance Agency, they should not be used as an indication of prevalence.
Based on Aged Care Funding Instrument (ACFI) assessments, between 1 July 2021 and 30 June 2022:
- there were 355 people in permanent residential care with Huntington’s disease listed as a condition affecting care, with a median age of 69 years
- 59% of these were women and 41% were men, with median ages of 69 and 68 years, respectively.
In October 2022, the Aged Care Funding Instrument (ACFI) was replaced with the Australian National Aged Care Classification (AN-ACC) funding model, which does not capture health condition information. Therefore, the most recent data for this section are from 2021–22, with no further updates. For more information, see the National Aged Care Data Clearinghouse tab in the Data sources section of the Neurological conditions in Australia report.
Mortality
Based on the National Mortality Database (NMD), in 2023:
- there were 110 deaths with Huntington’s disease recorded as the underlying cause (0.4 deaths per 100,000 population, or 0.3 per 100,000 population, age-standardised) and 29 deaths where Huntington’s disease was recorded as an associated cause (0.1 deaths per 100,000 population, or 0.09 per 100,000 population, age-standardised)
- males had a higher mortality rate (0.5 deaths per 100,000 population) with Huntington’s disease recorded as the underlying cause compared with females (0.4 deaths per 100,000 population) – the sex difference remained after age-standardisation (0.4 compared with 0.3 deaths per 100,000 population for males and females, respectively)
- the median age at death due to Huntington’s disease was 66 years old, compared with a median age of 82 years for all deaths in Australia (this means that half of the people with Huntington’s disease listed as the underlying cause live beyond 66 years)
- male deaths due to Huntington’s disease were slightly younger than female deaths (median of 65 years and 68 years, respectively).
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The median age at death due to Huntington’s disease was 65 years old, compared with a median age of 82 years for all deaths in Australia.
Socioeconomic and remoteness areas
The number of deaths due to Huntington’s disease were too few for meaningful comparison between different socioeconomic or remoteness areas.
Trends over time
From 2013 to 2023 the number of deaths due to Huntington’s disease increased from 84 to 110 deaths, with the crude rate remaining at around 0.4 per 100,000 population – the age-standardised rate remained consistent at around 0.3 per 100,000 population.
First Nations people
How common is Huntington’s disease among First Nations people?
There were no reliable sources to estimate the prevalence of Huntington’s disease for Aboriginal and Torres Strait Islander (First Nations) people.
Hospitalisations
For First Nations people, based on the National Hospital Morbidity Database (NHMD), in 2023–24 there were 24 hospitalisations with Huntington’s disease recorded as the principal and/or additional diagnosis.
Emergency department presentations
The National Non-admitted Patient Emergency Department Care Database (NAPEDC) uses the Principal Diagnosis Short List (EPD Short List), a set of codes and medical terms derived from ICD-10-AM classifications.
Emergency department (ED) presentations for Huntington’s disease are not recorded separately but are included within the broader “spinal muscular ataxia and systemic atrophies” category, which also includes motor neuron disease, among other conditions. As a result, it is not possible to determine or report the specific number of ED presentations for Huntington’s disease.
Health-system costs
The Health system spending on disease and injury in Australia 2023–24 report (AIHW 2025) did not include statistics for First Nations people, nor did it report on Huntington’s disease as a separate Australian Burden of Disease condition.
Burden of disease
The Australian Burden of Disease Study did not provide separate estimates for Huntington’s disease.
Mortality
For First Nations people, in 2023, there were 4 deaths with Huntington’s disease listed as the underlying cause.
More information and representative organisations
Healthdirect Australia is a government supported online service that provides health information, advice and referrals to the community. The healthdirect webpage on Huntington’s disease contains information covering topics such as symptoms, causes, how to get diagnosed, treatments and resources for further support. For detailed information on symptoms, diagnosis, treatments and support, see also the organisations listed below.
Huntington’s Australia is a national peak body for Huntington’s disease. They engage in advocacy and awareness campaigns, training and education for caregivers and service providers, and other services that support people impacted by Huntington’s disease. Details about research initiatives, community programs, support groups and other information about the condition is available on their website.
Huntington’s Disease Network of Australia is led by Professor Julie Stout of Monash University through a grant from the National Health and Medical Research Council (NHMRC) of Australia. A key initiative driven by the Network is the Map-HD Registry, a national registry that captures the prevalence and location of Huntington’s disease diagnoses to improve support and quality of life for effected individuals. The website also contains a directory of information about research activities and opportunities.
Huntington’s Victoria was founded in 1973 to raise awareness, understanding and support when little was known about the condition. The organisation continues this mission today through active engagement with individuals, families, carers, researchers and health care professionals both nationally and internationally. Among the information for people experiencing the condition, the website contains a peer forum, latest events, and how to get involved.
Data sources
For details about the other data sources used in this article, including the condition codes used to extract information about Huntington’s disease from each source (for example, mortality, hospitalisations et cetera), see Data sources in the Neurological conditions in Australia report.
The prevalence estimate for Huntington’s disease from Medina et al. (2022) were taken directly from the published article (Table 2 on p. 2332).
Notes
The Neurological conditions in Australia 2025 project was undertaken by members of the Chronic Conditions Unit of the Australian Institute of Health and Welfare (AIHW).
The AIHW acknowledges the ongoing contributions and consultation provided by the Department of Health, Disability and Ageing and the Neurological Conditions Expert Advisory Group. A special thanks is extended to Professor Julie Stout for their expert advice on Huntington’s disease. For further information on contributions to the project, see Notes in the Neurological Conditions in Australia report.
AIHW (Australian Institute of Health and Welfare) (2025) Health system spending on disease and injury in Australia 2023–24 AIHW website, accessed 29 October 2025.
Brain Foundation (2025) Huntington’s Disease, Brain Foundation website, accessed 19 November 2024.
Considine CM, Rossetti MA, Del Bene VA, Anderson K, Anderson SA, Celka AS, Edmondson MC, Nelson-Sheese AL, Piccolino A, Teixeira AL and Stout JC (2023), Huntington Study Group's Neuropsychology Working Group: Implementing Non-Motor Diagnostic Criteria. Movement Disorders Clinical Practice, 10: 1714-1724. doi:10.1002/mdc3.13910
Healthdirect (2023) Huntington’s disease, Healthdirect Australia website, accessed 21 March 2025.
Huntington’s Australia (2025) About - Huntington Australia, Huntington’s Australia website, accessed 22 May 2025.
Medina A, Mahjoub Y, Shaver L and Pringsheim T (2022) ‘Prevalence and Incidence of Huntington's Disease: An Updated Systematic Review and Meta‐Analysis’, Movement Disorders, 37(12):2327–2335, doi:10.1002/mds.29228.
National Disability Insurance Scheme (NDIS) (2025) Participants by diagnosis: Participants count by diagnosis data [data set], Participant datasets, NDIS website, accessed 13 March 2025.