Responding to the urgent gaps in knowledge regarding the impact of HTLV-1 on the health of Australians

Research program: 
The challenge: 

Human T-lymphotropic virus type 1 (HTLV-1) is a virus transmitted by blood, sex, and from mother to child, causing lifelong infection. While many people with HTLV-1 infection do not have symptoms, it can cause serious diseases including adult T-cell leukaemia-lymphoma (ATL) and HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP). While HTLV-1 is endemic among Aboriginal people in remote communities in central Australia, there remains major gaps in knowledge regarding its occurrence, distribution, and impact on mortality and illness among remote Aboriginal communities.

The project: 

The project comprises of two studies: an Australia-first longitudinal cohort study which evaluates the impact of HTLV-1 infection on mortality, illness, and health service utilisation among remote Aboriginal communities in central Australia; and a surveillance study which compiles systematic information on routine testing for HTLV-1 infection and HTLV-1 notifications in the Northern Territory, to gain understanding on testing coverage and positivity and factors associated with test positivity.

The method: 

The cohort study involves an initial contact with participants, to obtain consent and baseline data, with follow-up then taking place through data linkage and clinical record review over the subsequent five years. The surveillance study uses routine HTLV-1 laboratory testing data and Northern Territory notifications data to assess the occurrence of HTLV-1 infection.

The impact: 

This project will provide important information about how HTLV-1 affects remote Aboriginal communities and inform public health policy, clinical guidelines, and future research.

Project contact: 
Professor and Program Head
Project supporters: 
  • Australian Government Department of Health
Project collaborators: 
  • Baker Heart and Diabetes Institute
  • Menzies School of Health Research
  • Central Australia Academic Health Science Network (CA AHSN)
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