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Frontiers in MS Research: Driving Innovation and Collaboration for a Better Future for People with MS

18 December 2024

  • The symposium highlighted groundbreaking research on MS prevention, early detection, and highly effective treatments, with global collaborations driving innovation.
  • Key initiatives included the launch of the EBV in MS National Collaborative Platform and an $8 million partnership with MS Canada to propel the prevention agenda forward.
  • Discussions highlighted the importance of empowering the MS community to improve communication and quality of life for people with MS.

Welcoming a Vision for the Future

The symposium began with a warm welcome from George Pampacos, Chair Elect of MS Australia, and Associate Professor Des Graham, the outgoing Chair. George expressed gratitude to The University of Sydney’s Brain and Mind Centre for hosting the event at the new Susan Wakil Health Building, located on Gadigal land, the traditional territory of the Gadigal people of the Eora Nation.

Des reflected fondly on returning to campus, sharing that the building did not exist during his undergraduate nursing degree. He remarked that it felt like coming full circle, particularly as he prepares for retirement to spend much-needed time with his family and grandchildren.

Rohan Greenland, CEO of MS Australia, presented new developments from MS Australia. He officially launched the EBV in MS National Collaborative Platform, an initiative aimed at accelerating research into the role of Epstein-Barr Virus (EBV) in MS. He emphasised MS Australia’s commitment to the goals of prevention, ultra-early detection, and early treatment.

The opening address was delivered by Dr. Sarah Flaim, Chief Operating Officer at the National Imaging Facility (NIF), a person living with MS, and an MS Australia Lived Experience Expert Panel (LEEP) member.

Sarah shared her journey of receiving an MS diagnosis, highlighting the challenges of navigating a diagnosis of exclusion, which can take considerable time. Sarah shared how the Frontiers in MS Research program resonated with her both personally and professionally, underscoring the importance of ongoing research and support for the MS community.

Keynote Sessions: Insights from the Experts

The first session, chaired by Professor Michael Barnett, featured keynote speakers who explored the landscape of MS prevention.

Professor Ruth Ann Marrie from Dalhousie University, Canada, highlighted the importance of identifying the early ‘prodromal phase’ in MS to improve prevention strategies. She outlined how MS develops through interactions between genetic factors and modifiable exposures such as smoking, low vitamin D, obesity, and EBV. Promising advancements, like an EBV vaccine, could offer new prevention opportunities.

Professor Marrie also emphasised the need for global equity in prevention efforts, ensuring strategies are accessible to diverse populations, especially in low-resource settings where modifiable risk factors may be more prevalent. Drawing insights from Parkinson’s disease research, she discussed using high-risk criteria and predictive scoring to enable early detection and targeted interventions, reducing the burden of MS worldwide.

Professor Bruce Taylor from the University of Tasmania and the Menzies Institute for Medical Research provided valuable insights into how prevention efforts could significantly reduce the overall burden of MS.

He emphasised the critical role of epidemiology in understanding the disease, as it sheds light on associations and trends that inform prevention strategies. Similar to Professor Ruth Ann Marrie, he discussed the natural history of MS, noting that both the prevalence and incidence are on the rise.

Professor Taylor highlighted the absence of a definitive biomarker (biological sign) for MS, which complicates early detection and prevention efforts. However, he explained that factors such as biological sex, age, vitamin D levels (linked to latitude and UV exposure), and obesity during adolescence are known to influence MS risk.

Some of these factors, like obesity and smoking, are modifiable, while others, such as biological sex, are not. Changes in latitude, for example, would need to occur near birth to have a meaningful impact, making it an impractical prevention strategy. These insights are vital for designing clinical trials for prevention that focus on modifiable risk factors, aiming to reduce the disease’s impact before symptoms appear.

Primary Prevention: Tackling MS at its Roots

Dr Heidi Beadnall chaired the following session focused on innovative approaches to reducing risk factors for MS.

Dr. Seyhan Yazar from the Garvan Institute of Medial Research, and Dr. Jennifer Massey from St Vincent’s Clinic, discussed EBV and the Open Coast-to-Coast Australian Multiple Sclerosis (OCCAMS) Consortium, which uses artificial intelligence (AI) to analyse medical records and identify early immune responses to environmental factors.

They explained how the study aims to identify people at risk of MS earlier by examining the timing of non-specific symptoms, which could stem from a viral infection or the use of medications for other conditions.

Dr. Massey described EBV as a ‘master manipulator’ of B cells, influencing their behaviour and development in ways that may contribute to MS. The team is leveraging electronic medical records and training AI models to detect subtle patterns that may indicate the early stages of MS. The ultimate goal is to advance these methods into a multimodal approach, combining different types of data from multiple sources to provide a clearer picture. This innovative work has the potential to transform how MS is understood and managed, enabling earlier and more precise prevention efforts.

Dr. Steve Simpson-Yap from The University of Melbourne discussed how many people with MS explore dietary modifications following their diagnosis, often turning to online sources of varying quality and evidence.

He explored how diet might impact MS through potential mechanisms, such as reducing BMI and managing body weight, lowering lipid levels in the blood, reducing salt and saturated fat intake, providing antioxidants to combat oxidative stress, supporting a healthy microbiome, and influencing mechanisms that regulate gene expression.

Despite these potential pathways, Dr. Simpson-Yap emphasised that there is insufficient evidence to support specific ‘MS diets.’ Most popular MS diets are exclusionary; omitting key food groups and nutrients and are difficult to sustain. He recommended following Australian dietary guidelines, which promotes a balanced and healthy diet as the best approach for people with MS.

Secondary Prevention: Innovations in Early Intervention

Following lunch, Dr Justin Garber chaired the session on secondary prevention, highlighting the importance of early detection and intervention. This session showcased advances in imaging techniques and the role of disease-modifying therapies (DMTs).

Professor Michael Barnett and Dr. Chenyu Wang from The University of Sydney discussed integrating clinical MRI with AI for more accurate MS disease activity detection. They highlighted advancements in lesion analysis and brain volume (atrophy) monitoring, explaining how AI could detect subtle changes that a radiographer might miss. This includes a new type of lesion analysis focusing on slowly expanding lesions, which are particularly important for understanding disease progression.

They emphasised that this advancement in technology will not replace radiographers but will complement their work, making the disease monitoring process more efficient and accessible for clinicians.

Future developments aim to include individual lesion volume analysis, further enhancing the precision of MS management. This integration of AI with clinical MRI has the potential to transform how MS is monitored, improving both accuracy and ease of use in clinical settings.

Professor Tomas Kalincik from The University of Melbourne provided an overview of how early treatments have significantly improved the prognosis for MS. He explained that DMTs can reduce relapses and slow disability progression. Over time, the disease course can change, and individuals are recruited into clinical trials at various stages, as seen with emerging treatments like BTK inhibitors.

Professor Kalincik highlighted the shift from the traditional pyramid approach to MS treatment, where less effective therapies were used first, to the current approach in Australia, where people with MS can start treatment with highly third-line therapies. This shift has led to better outcomes, with fewer relapses and slower disease progression. Data from MSBase strongly supports early intervention, highly effective therapies as the best strategy for improving long-term outcomes.

He also discussed unique challenges in paediatric-onset MS, where children may experience relapse rates 2 to 3 times higher than adults but often recover better after each relapse. However, the cumulative damage over time can still lead to significant disability, underscoring the importance of early and effective treatment to mitigate long-term impact.

 

Tertiary Prevention: Improving Quality of Life in MS

Managing symptoms and improving quality of life were the focus of this session, chaired by Associate Professor Milena Gandy.

Associate Professor Todd Hardy from The University of Sydney introduced the forthcoming FIRMS EBV trial, which investigates whether targeting EBV can alleviate MS-related fatigue.

Fatigue is a major issue for people with MS, often leading to early retirement and significantly affecting quality of life. While DMTs help manage relapses and progression, they do not address fatigue, making this an area of critical unmet need.

Associate Professor Hardy explained that EBV, which lies dormant in B cells, can reactivate during its ‘EBV-lytic’ phase. In this phase, the virus sheds particles, potentially driving an immune response that can affect the central nervous system, causing new lesions, relapses, and fatigue. He noted that EBV mononucleosis, a condition often referred to as glandular fever, has been linked to chronic fatigue, further highlighting the virus’s role in fatigue-related conditions.

The trial, made possible through The Medical Research Future Fund (MRFF) funding and MS Australia’s support, followed extensive consultation with experts and consumer groups. From an initial pool of 11 drugs of interest, two were selected for the trial: spironolactone, which inactivates a protein essential for EBV viral production, and tenofovir, which limits the replication of EBV during the lytic phase.

Participants will use the Fatigue Severity Scale to self-score their fatigue over a 20-week treatment period, with blood samples collected for future studies. This innovative trial aims to shed light on effective treatments for fatigue, offering hope to those impacted by this debilitating symptom.

Professor Ingrid van der Mei from the University of Tasmania, and the Menzies Institute for Medical Research presented findings on pain in MS, focusing on specific pain types. People with MS often struggle with pain, but research and support are still lacking. Data from the Australian Multiple Sclerosis Longitudinal Study (AMSLS), supported by MS Australia, showed that almost 53% of respondents experience regular pain, with muscular pain being recognised as one of the more severe types. Pain was categorised into pain in the extremities, and head and neck pain, with people with progressive MS reporting more frequent pain.

DMTs were not perceived to alleviate pain, though those receiving infusion therapy for their MS have reported some relief. Pharmacological options like opioids and sedatives can be effective, but non-pharmacological approaches such as exercise, sleep, and hot/cold therapies can also help.

Professor van der Mei highlighted this AMSLS data is invaluable for leveraging policy-making decisions and informing translational research. She emphasised the importance of developing practical tools to support people with MS, including fact sheets in collaboration with MS Australia on pain management and body maps to help individuals identify and communicate their pain types and areas to healthcare professionals.

These tools aim to bridge the gap between people with MS and the healthcare system, improving pain management strategies.

 

Panel Discussion: Shaping the Future of MS Prevention and Care

Following afternoon tea, the symposium concluded with a dynamic panel discussion featuring experts and people living with MS. The panel, moderated by George Pampacos, explored emerging research, clinical trials, and collaborative efforts to shape the future of MS prevention and care. Panellists included Professor Ruth Ann Marrie, Professor Bruce Taylor, Dr. Sarah Flaim, and Nicolette Murphy, a person also living with MS.

The discussion began with George asking about new advances in the field. Professor Bruce Taylor highlighted the forthcoming 2025 MS diagnosis guidelines, which aim to enable earlier and more accurate diagnoses despite the absence of biomarkers, marking a critical step forward. Professor Ruth Ann Marrie emphasised the need for tools to recognise the prodromal phase and called for enhanced global collaboration to accelerate progress in MS research and care.

When asked about research gaps, Nicolette Murphy stressed the importance of effective communication with people living with MS and the need for flexibility to accommodate their challenges.

Dr. Sarah Flaim likened living with MS to having a full-time job, noting the difficulty of participating in trials without more adaptable approaches. She also highlighted gaps in patient education and empowerment but praised MS Australia for providing trustworthy and accessible resources.

Professor Taylor mentioned the Understanding MS MOOC and new mini-MOOCs being developed in collaboration with MS Australia and MS Plus, covering topics such as DMT selection, mental health, ageing, caregiving, and women’s health.

The panellists also discussed balancing quality of life with pursuing a cure. Professor Taylor pointed out that quality of life should always be prioritised in trial design, as participation itself often benefits individuals, providing optimism and a sense of contribution.

Nicolette and Sarah both echoed this sentiment, emphasising the mental health benefits of being involved in trials and expressing excitement about opportunities like the PLATYPUS trial and global collaborations with Canada, the US, and the UK.

The discussion also covered innovative trial designs, with Ruth and Bruce advocating for adaptive clinical trials to shorten the time it takes for new therapies to reach the market. They applauded MS Australia’s support for non-pharma-driven trials, such as those repurposing drugs and addressing modifiable lifestyle factors. Ruth also stressed the importance of translating research findings into actionable policies, urging better communication with policymakers to drive meaningful change.

The conversation concluded with a focus on DMT decision-making. Nicolette highlighted the importance of being able to choose a therapy while receiving tailored guidance to suit individual needs. Bruce acknowledged the overwhelming amount of information at diagnosis, supporting both a guided approach and giving people with MS time to reflect. Ruth noted that preferences vary over time, underscoring the importance of regular check-ins to ensure therapy aligns with evolving needs.

Rohan Greenland concluded the event by emphasising that the symposium serves as a springboard for action, highlighting the recently announced $8 million partnership with MS Canada to drive the prevention agenda. He underscored the importance of collaborative efforts in advancing MS prevention, care, and policy on a global scale.

The Frontiers in MS Research Symposium was a landmark event, bringing together researchers, healthcare professionals, people living with MS, their families, carers, and the broader MS community. It reinforced the critical role of innovation and collaboration in improving outcomes for those living with MS.

We extend our heartfelt thanks to all the speakers, chairs, and attendees whose contributions made this event a success. We look forward to sharing details about next year’s conference soon, which promises to be just as inspiring.

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Frontiers in MS Research: Driving Innovation and Collaboration for a Better Future for People with MS