Outcomes remain particularly challenging for people with progressive forms of the disease, those living outside metropolitan areas, and those navigating complex health and disability systems.<\/p>\n
To better align its work with the needs and experiences of the MS community, MS Australia undertook its Research and Advocacy Priorities Survey<\/a> in 2025, building on similar surveys conducted in 2021 and 2016.<\/p>\n More than 2\u00a0000 people participated, including people living with MS, carers, family and friends, healthcare professionals, researchers and those who work in the MS space. The findings provide a contemporary, community\u2011driven roadmap for MS research investment and policy advocacy in Australia.<\/p>\n What the community told us<\/p>\n Survey participants were asked to rank six overarching research goals. As in the 2021 survey, the two highest priorities were finding a cure for MS through repair and regeneration and preventing MS. These consistent results underscore the enduring importance of long\u2011term, transformative research goals for the MS community.<\/p>\n However, a notable shift emerged beneath these headline priorities. Improving the diagnosis of MS rose ahead of better treating MS when participants ranked what mattered most to them. This change could reflect growing awareness of the benefits of early diagnosis, alongside broader access to high-efficacy disease-modifying therapies in Australia.<\/p>\n It also highlights persistent challenges, particularly for people with atypical presentations or progressive disease, where diagnostic certainty may be delayed and treatment options remain limited. Additionally, access to specialist neurologists is far from even across Australia, with remote and regional areas especially underserved, and this can lengthen diagnostic journeys and delay the start of therapy.<\/p>\n When responses were analysed across all rankings, rather than just first or second preferences, better treating MS remained a high priority overall, especially for progressive forms of the disease. This balance between long\u2011term ambition and immediate clinical need is an important message for clinicians and policymakers alike: the MS community wants both hope for the future and better care now.<\/p>\n Clinical research was the most highly valued research stage, with strong support also expressed for translational and fundamental research, signalling a clear appetite for a balanced pipeline from discovery to clinical impact.<\/p>\n Symptom management was another prominent theme. Cognitive function, mobility, fatigue and pain were most frequently rated as high priorities for research among a predefined list of MS symptoms, while anxiety and MS hug<\/a> were commonly identified in open\u2011text responses as areas needing further research. It is notable that, with the exception of mobility, these are largely \u2018invisible\u2019 symptoms and can be difficult to score or assess clinically. In addition, the management of many of these symptoms requires a multidisciplinary team-based approach.<\/p>\n Finally, responses to the open\u2011ended question about unmet priorities most commonly emphasised the need for better support and education for people with MS and their families. This highlights the impact of MS not only as a disease that can be difficult for individuals to understand and come to terms with, but also a disease that affects families and a wider network of supporters. Research and clinical care that extend beyond the individual and their symptoms, and address the broader lived experience of MS, therefore emerge as a clear priority.<\/p>\n Beyond research: advocacy priorities that affect clinical care<\/p>\n The survey also asked participants to rank advocacy priorities, providing insight into the policy and system-level changes the MS community views as most urgent. Additional funding for MS research and approval of new MS medications were the top two priorities, consistent with previous surveys and reflecting ongoing concern about access to emerging therapies, particularly for progressive MS.<\/p>\n Disability policy featured prominently. Improving the National Disability Insurance Scheme (NDIS) for people living with MS and addressing the needs of those who are not eligible for the NDIS, were ranked among the highest priorities. Open\u2011text responses highlighted ongoing concerns about NDIS access and eligibility, support for carers and families, access to healthcare and treatment, and persistent gaps in services for people living in regional and remote areas. Access to specialist neurologists and timely treatment \u2014 challenges that are often amplified outside of our capital cities \u2014 rounded out the top advocacy concerns.<\/p>\n For clinicians, these advocacy priorities reinforce the clinical reality that access to specialist care, coordinated services and appropriate supports can substantially influence patient outcomes.<\/p>\n Implications for clinicians, policymakers and the health system<\/p>\n The 2025 Research and Advocacy Priorities Survey results<\/a> deliver a clear mandate. First, investment in MS research must remain balanced \u2014 supporting ambitious long\u2011term goals such as prevention and cure, while accelerating research that improves diagnosis, symptom management and treatment today. Clinicians have a role to play in advocating for research that addresses real\u2011world clinical challenges, particularly for people with progressive disease.<\/p>\n Second, early and accurate diagnosis deserves attention. MS Australia\u2019s World MS Day \u2018My Diagnosis\u2019 report<\/a> has spotlighted the diagnostic challenges still experienced by many people today. Continued education, access to specialist input and appropriate use of diagnostic technologies are critical to ensuring people receive the right care at the right time. Research that refines diagnostic pathways and prognostic tools will be essential. Looking ahead, achieving ultra\u2011early diagnosis before irreversible neurological damage occurs will require sustained investment in research to identify and validate effective biomarkers. This aligns with recent recommendations from the Multiple Sclerosis International Federation, which highlight the need for coordinated action across research, clinical practice and policy to reduce delays in MS diagnosis globally.<\/p>\n These advocacy priorities also highlight the broader systems that shape outcomes for people living with MS and their families and supporters. While the survey focused on research and advocacy priorities rather than clinical outcomes, the prominence of issues such as access to specialist care, disability supports and services, particularly for people living outside metropolitan areas, reinforces how closely healthcare and disability systems are intertwined for this population.<\/p>\n Overall, the survey outcomes demonstrate strong community support for MS Australia\u2019s strategic focus on research, advocacy and evidence\u2011based information. For Australia\u2019s medical community, it reinforces the importance of listening to people affected by MS and responding to their priorities as part of delivering effective, person\u2011centred care.<\/p>\n Dr Tennille Luker is Head of Research at MS Australia.<\/p>\n Dr Julia Morahan is Deputy Chief Executive Officer of MS Australia.<\/p>\n Rohan Greenland is Chief Executive Officer of MS Australia and Chair of Neurological Alliance Australia (NAA).<\/p>\n Professor David Tscharke is a virologist and immunologist at the John Curtin School of Medical Research at The Australian National University. David was diagnosed with MS in 2011 and now directs part of his research effort to MS.<\/p>\n The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the\u00a0MJA\u00a0or\u00a0InSight+\u00a0unless so stated.\u00a0<\/p>\n Subscribe to the free\u00a0InSight+\u00a0weekly newsletter\u00a0here<\/a>. It is available to all readers, not just registered medical practitioners.\u00a0<\/p>\n![\"What](\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2026\/03\/shutterstock_2427018191-1024x682.jpg\")
Access to specialist neurologists is far from even across Australia, with remote and regional areas especially underserved (Maria Sbytova \/ Shutterstock).<\/p>\n