Our impact


Understanding the true cost of illness

The Health Economic Impact report analyses in-depth information on quality of life, and the direct and indirect costs of MS. The latest report reveals the number of people living with MS in Australia has increased by 30% over the last four years. The cost of MS has significantly increased over the same period. Individual costs are $73,457 per year, and the total cost for all people living with MS in Australia is $2.5b.

This data is used to underpin crucial advocacy work in this space, including calling on the Australian Government for:

  • Greater investment in MS research.
  • Regular data collection through the Australian Institute of Health and Welfare.
  • Better access to care including MS Nurses.
  • Better understanding of MS and other neurological conditions within the National Disability Insurance Scheme (NDIS) via a neurological advisory group.
  • Better investment in broader preventative health measures, including healthy weight, tobacco control, nutrition and physical activity, all of which contribute to brain health.

Developing new treatments

In both 2017 and 2022, members of the MS community in Australia identified the development of a cure for MS via the repair and regeneration of brain cells as their highest research priority.

More than a decade of discovery research into neuronal repair pathways via remyelination has not yet resulted in a remyelination therapy becoming clinically available. However the MS Research Flagship has recently made significant progress in this space.

  • 2019: Professor Kaylene Young and colleagues demonstrated that low intensity, repetitive magnetic brain stimulation (MBS) promotes the survival and maturation of newborn oligodendrocytes in the adult mouse brain and more recently showed that it could promote remyelination.
  • 2021: Professors Kaylene Young and Bruce Taylor completed a phase I clinical trial (TAURUS 1) which found that MBS was safe and has significant potential to sustain brain insulation in MS.
  • 2022: The team launched the TAURUS 2 phase II clinical trial, investigating the safety and preliminary efficacy of MBS for people living with MS. This trial will recruit 108 people with MS at six sites across Australia.

This program of work has leveraged a total of $2.3M in competitive funding and $500,000 in philanthropic funding.

The TAURUS projects demonstrate the translational capability and capacity of the MS Research Flagship, taking an idea from the laboratory into the clinic and into the lives of people with MS by addressing an area of unmet need and utmost importance to the MS community.

Positively changing policy

The Australian Multiple Sclerosis Longitudinal Study (AMSLS), a survey-based research study that has been running since 2001, is used by policy makers and MS medical and support services to create positive change and improve the lives of people with MS.

The impact of the AMSLS is wide-reaching. For example:

  • AMSLS-based research on comorbidities and lipids has been used to develop lifestyle recommendations for people with MS and health professionals.
  • AMSLS-based fact sheets on the burden of disease are frequently sent to journalists and politicians, and findings are embedded in roadmap documents and submissions to the Pharmaceutical Benefits Advisory Committee. As a result, the medication Ofatumumab was listed on the pharmaceutical benefits scheme (PBS) in 2021, saving people with relapsing remitting MS $28,000 per year.
  • AMSLS-based research on employment and work productivity has been used to develop an online intervention called MS WorkSmart. A randomised controlled trial will test the effectiveness of MS WorkSmart.
  • Reports based on AMSLS data have been used for service planning, service delivery and pharmaceutical reimbursement applications by MS Australia, MS Plus, MS Queensland, Merck, Roche, and Biogen.
  • The 2022 MS Nurse Care in Australia report, based on AMSLS data, is being used to lobby for additional and better access to MS nurses.

Positively changing behaviour

The Understanding MS massive open online course (MOOC) was developed by the MS Research Flagship in close collaboration with members of the MS community, and MS partner organisations.

The MS MOOC has achieved global reach, >40,000 enrolments across 174 countries and has been the recipient of multiple international awards (#1 MOOC 2019 and ranked in the top 10 'Best online courses of all time' 2020, 2021, 2022 and 2023).

In measuring its impact, course survey results have found that:

  • 97% of course completer's are satisfied with the course
  • 98% rate the course as above average
  • 63% have applied the information they have learned
  • 44% report behaviour change, 65% report measurable change and 68% show improvement.

Importantly, people completing the course show a significant improvement in MS knowledge, health literacy, confidence in communicating, and increased self-efficacy for people with MS.

Involving consumers and community

The MS Research Flagship has a well-established and dedicated consumer and community reference committee (C&CRC) ensuring that consumer and community involvement (CCI) is at the heart of our program.

The committee partners with the scientific advisory committee and steering committee — both with consumer representation — to provide the governance structure for the Flagship. Importantly, members of the C&CRC provide ‘lived experience’ expertise to the various research projects of the Flagship.

In 2023, the C&CRC completed 794 hours of work across 17 different MS projects and 16 governances. Their involvement has provided the lived experience perspectives that have improved research ideas and provided clarity on why the research is important to the community. They have helped make the research more accessible through use of language that is easy to understand, positive and empowering. The have helped shape the direction of research projects and provided researchers with new ideas and inspired our researchers to continue working towards a future without MS.

From 2019 to 2022 the average grant success rate of the MS Research Flagship increased from 29% to 67%, demonstrating the Flagship's governance and CCI model has had a significant impact.