- Strong community engagement: 2,081 participants shared their views, with a 62% completion rate, ensuring broad representation across the MS community.
- Top research priorities: Finding a cure, preventing MS, and improving treatment remain the highest priorities, with early and accurate diagnosis gaining importance.
- Advocacy priorities: Increased research funding and access to new treatments remain the top concerns, alongside improved NDIS support and specialist care.
- Campaign awareness: Moderate overall visibility, with strong engagement among key audiences and opportunities to broaden reach.
- Communication and resources: MS Wire newsletter is the most valued resource, and half are satisfied with research outcome updates.
MS Australia’s 2025 Research and Advocacy Priorities Survey has provided a comprehensive roadmap for shaping the future of research, advocacy, and engagement strategies.
With 2,081 participants and a strong 62% completion rate, the survey reflects thousands of voices across the MS community, including people living with MS, carers, health professionals, and researchers.
Why This Survey Matters
This is the third iteration of MS Australia’s Priorities Survey (following 2016 and 2021), designed to ensure that our work aligns with the evolving needs of the MS community. The insights gathered will guide strategic decisions on research funding, advocacy campaigns, and resource development.
Who Took Part?
Participants represented a broad demographic spread across age, gender, disease duration, severity, and location. The distribution of MS types closely mirrored the Australian MS population, reinforcing the inclusivity and representativeness of the survey.
Top Research Priorities
The MS community’s research priorities remain largely consistent with previous surveys, with some shifts in emphasis. When looking at the overall weighted rankings, which consider all responses, the top priorities are:
- Finding a cure for MS through repair and regeneration of cells
- Preventing MS
- Better treating MS
- Improving MS management and care
- Improving the diagnosis of MS
- Predicting an individual’s disease course (prognosis)
However, when focusing on what people most often ranked as their number one or two priorities, improving the diagnosis of MS moves up to third place. This suggests that while diagnosis isn’t the highest overall priority, many people see early and accurate detection as critically important.
Top Symptoms Identified for Research
The MS community highlighted the symptoms that most impact daily life and should be prioritised for research into better treatment and care. The top six symptoms were:
- Cognitive function problems
- Walking and mobility problems
- Fatigue
- Pain
- Vision problems
- Speech and swallowing problems
When focusing on different types of MS (such as relapsing remitting MS and progressive MS), these rankings shifted slightly. However, cognitive issues and fatigue consistently remained in the top six across all MS types.
The most frequently mentioned additional symptoms were MS hug (a painful, squeezing sensation around the torso) and anxiety, consistent with the 2021 survey results.
MS Australia’s Research Program
As part of our ongoing commitment to excellence, MS Australia is reviewing its research program to ensure its research agenda is both community-driven and responsive to new challenges and opportunities in MS research.
The survey results show that while there is strong support for MS Australia’s Investigator-led Grants Program, many remain unsure whether current funding levels are sufficient to meet the needs of the research community. In anticipation of this feedback, MS Australia has increased funding levels for some grants schemes commencing in 2026, aiming to better support researchers.
National Collaborative Research Platforms are coordinated initiatives that bring together experts from across Australia to focus on specific topics in MS research. These platforms are designed to promote collaboration, eliminate duplication of effort, and accelerate progress by uniting researchers, clinicians, people living with MS and other stakeholders around shared goals.
Awareness of MS Australia’s platforms, such as the Australian MS Longitudinal Study (AMSLS) and the MS Australia Brain Bank, is high among professionals, but less so among people living with MS.
These platforms are widely valued by those who use them, with most researchers describing them as very useful for advancing MS research. There is also broad support for increasing funding for these platforms, reflecting the community’s recognition of their importance in driving progress.
Top Advocacy Priorities
Advocacy priorities also echo previous findings, with strong calls for systemic improvements. The top advocacy priorities are:
- Additional funding for MS research
- Approval of new MS medications
- An improved NDIS for people living with MS
- Meeting the disability needs of those not eligible for the NDIS
- Better access to specialist neurologists
- Better access to treatment, including disease-modifying therapies
The need for increased research funding and access to new treatments is universal across the MS community. Notably, these remain the top two overall advocacy priorities, just as they were in the 2021 survey. This consistency highlights the ongoing importance the community places on driving research breakthroughs and expanding treatment options for everyone affected by MS.
While these priorities are shared by the broader community, it did differ by MS type. An improved NDIS was the second highest priority for people with RRMS, those with progressive MS placed greater emphasis on the approval of new medications.
Campaign Awareness
The survey assessed how well MS Australia’s advocacy campaigns are reaching the community. Advocacy campaigns are organised efforts by MS Australia to raise awareness and influence policy on key issues affecting people with MS, such as disability support, research funding, and access to treatments. These campaigns target government, health providers, and the public to drive positive change for the MS community.
Around 40% of participants were aware of at least one campaign, indicating moderate visibility. Awareness varied depending on the campaign and its target audience. For example, the “A Better NDIS for People Living with MS” campaign resonated strongly with NDIS participants, while younger respondents (aged 18–30) showed the highest awareness of the Lived Experience Expert Panel.
These results suggest that campaign engagement is influenced by both relevance and audience targeting. While some campaigns are well known among specific groups, there is an opportunity to further increase awareness across the broader MS community by tailoring messages and outreach strategies.
Communication and Resources
Clear and effective communication is essential for keeping the MS community informed and engaged with research and advocacy efforts. The survey found that nearly 70% of participants rated MS Australia’s communication of research and advocacy as “well” or “very well,” reflecting strong overall satisfaction. However, only about half of participants were satisfied with how research outcomes and the impact of funded projects are communicated.
The MS Wire newsletter emerged as the most widely accessed and helpful resource, with over half of participants using it. Other resources, such as the Crisis Toolkit and the MS Treatments webpage, were valued by smaller groups, often reflecting their specific needs or interests.
Conclusion and Next Steps
The survey results show that MS Australia’s research and advocacy efforts are highly valued by the community. There is strong confidence in the Investigator-led Grants Program and National and International Collaborative Research Platforms, and most participants rate communication and outreach as effective. Campaigns and resources are reaching key audiences, reinforcing MS Australia’s reputation as a trusted leader in research and advocacy.
Looking ahead, MS Australia will focus on meeting the evolving needs of the MS research community, increasing awareness of national collaborative research platforms, enhancing visibility of research outcomes, and expanding access to resources. This will ensure the community’s voice continues to shape the future of MS research and advocacy.
Explore the full report and see how your feedback is shaping the future of MS research and advocacy.
