Our impact

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.

• Read the latest (interim) report Health Economic Impact of Multiple Sclerosis in Australia in 2021

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.

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.

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.

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.

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.

Multi-omics research refers the integrated analysis of complementary data sets obtained from different parts of cell biology, including DNA, RNA, proteins, metabolites, and fats. The MS Research Flagship‘s work in this field has demonstrated far-reaching impacts, leading to a better understanding of MS disease biology and revealing potential clinically relevant insights (e.g., biomarker identification).

The team have discovered 39 novel proteins that are implicated in MS. This work was recognised among the top 3 clinical research papers from the Menzies Institute in 2022, and the best oral presentation award at the Gene mappers 2023, the leading conference in complex trait genetics in Australasia. In addition, the team discovered a novel genetic causal effect of serine on MS onset confirming serine-related genetic scores predict MS disability progression. In 2023, this research was featured by The European Committee for Treatment & Research in MS, the group responsible for the world’s largest annual International Congress in MS. Finally, the discovery of the genetic variation in LRP2 gene associated with MS relapse risk in 2017, is one of the first genetic discoveries that directly implicates non-immunological drivers of disease severity.

We have taken a multidisciplinary approach to examine the shared genetic architecture between MS and other diseases. This research, published in 2021, was featured by the editors at Nature Communications as one of the top 50 papers recently published in genetics, genomics & epigenetics, demonstrating the international impact of the team’s work. Dr Yuan Zhou was awarded Tasmanian Young Tall Poppy, 2023.

The AUSIMMUNE/AUSLONG cohort study started in 2003, enrolled 282 people with MS and 533 age and sex matched controls from 4 geographically distinct regions of Australia; Brisbane, Qld; Newcastle, NSW; Geelong and the western districts of Victoria; and Tasmania. The AUSIMMUNE study produced important insights into factors associated with MS including;

• low sunlight exposure
• lower live birth rates
• exposure to Epstein Barr Virus (EBV) and Human Herpesvirus 6 (HHV6)

The AUSIMMUNE study followed participants for 2-3 years, then became known as the AUSLONG study. The AUSLONG study has followed participants for more than 20 years. It is the longest cohort studies of people with MS in the world, with ~75% of people remaining in the study.

The AUSLONG study identified that a Mediterranean diet and higher quality diets result in improved MS outcomes including; depression, anxiety, fatigue and relapse. AUSLONG determined that employment is an important outcome for people with MS. Factors impacting on employment outcomes include comorbidities (e.g. hypertension, diabetes and heart disease), and MS disease activity within the first 5 years of diagnosis. Fatigue is the greatest barrier for returning to work. This has led to the development of MS WorkSmart, a clinical trial aiming for people with MS to remain productive in the workforce, with potentially significant health and economic impacts.

AUSIMMUNE/AUSLONG has published >45 manuscripts and conference presentations, cited >3257 times. The findings have been adopted by MS Australia in their Modifiable Lifestyle Factors and MS Clinical Guidelines, by health policy makers (Ministry of Health Portugal, Sweden and RAND Europe) and in the American and European Consortium of Multiple Sclerosis Consensus Guidelines. Twelve students have completed their PhD‘s and remain active in research, two national collaborations developed and >$3.2mil in funding secured. This demonstrates significant translation and impact of AUSIMMUNE/AUSLONG studies.