MS Research Flagship
Newsletter

TAURUS 2: all sites now active

All six sites of the MS Research Flagship’s TAURUS 2 trial are now actively recruiting participants. This groundbreaking clinical trial, which aims to determine if low intensity magnetic brain stimulation is an effective treatment for MS, continues to make headlines months after its launch in late 2022.

The race is now on with the teams in Hobart, Launceston, Newcastle, Melbourne, Perth and Brisbane hoping to enrol 108 participants collectively before the end of February 2024.

Get involved

Are you interested in being part of this exciting research? Check out the:

• 🎥 Video for participants
• 🌐 TAURUS 2 MS trials webpage

The Examiner newspaper article featuring the Launceston General Hospital TAURUS 2 site

TAURUS 2 is funded by the Australian Government and the Irene Phelps Charitable Trust

PLATYPUS clinical trial launch

We’re thrilled to be part of the new PLATYPUS clinical trial which launched at MS Australia's Progress in MS Research Conference in November.

PLATYPUS, which stands for PLatform Adaptive Trial for remYelination and neuroProtection in mUltiple Sclerosis, will test the efficacy of potential brain repair treatments in people with progressive MS. Its innovative design will allow it to test two repurposed drugs simultaneously, reducing the turnaround time for results.

The trial is an extension of the UK's OCTOPUS trial which launched in April this year.

Funded by MSWA and MS Australia, PLATYPUS will be rolled out across Australia via a collaboration of 20 academic and healthcare institutions and aims to recruit more than 250 participants.

More information

🌐 MS Australia: PLATYPUS media release

Members of the Hobart PLATYPUS team based at Menzies: (left to right) Professor Bruce Taylor, Natasha Stevens, Professor Kaylene Young, Professor Ingrid van der Mei

PLATYPUS is funded by MSWA and MS Australia

MS Research Flagship website is live!

We are delighted to announce that the new MS Research Flagship website is now live.

The website has been developed to launch a platform of tools and resources for both MS researchers and the wider MS community.

These include our health economics simulation model, our MS Stem biobank and our new online resources — four massive open online courses (MOOCs), digital programs MS WorkSmart and InforMS and our My SymptoMS app — as they become available.

The website and its resources were developed with funding from the Australian Government's Medical Research Future Fund.

A huge thank you goes out to members of the Consumer & Community Reference Committee, Leadership Group and researchers who gave invaluable feedback about the website during its development.

We look forward to you visiting!

🌐 www.msresearchflagship.org.au

Screenshot of the website's home page

Progress in MS Research Conference

The MS Research Flagship was well represented at MS Australia's Progress in MS Research Conference this year, with 20 staff and students and two members of our Consumer & Community Reference Committee (C&CRC) travelling to Perth, WA to attend and contribute.

The conference, which ran from 30 November to 1 December, was a wonderful showcase of the innovative and world-class MS research underway today and into the future. It also had an active focus on lived experience and consumer involvement in research.

Kicking off for the Flagship in session one was Professor Kaylene Young presenting in a research session on myelin repair. Amin Zarghami and Dr Ting Zhao, speaking in the epidemiology and health economics session, rounded out the first day.

Dr Nicholas Blackburn and consumer research partner Dr Anna Ritchie set the scene on the second day giving the Australian Keynote address on lived experience and consumer involvement in research.

Later in that session Chris Gumley, Chair of our C&CRC and Viv Jones, our Consumer and Community Involvement Manager participated in a lively panel discussion on consumer involvement and barriers to its inclusion in research. And Professor Bruce Taylor was on the panel to discuss MS and the National Disability Insurance Scheme (NDIS).

Ending the day with their excellent rapid fire talks were Dr Valery Fuh-Ngwa, Tadele Adal and Baye Agnew.

The third and final day was split into parallel sessions for research and community. In research, we saw Dr Xin Lin present on genetics and Dr Julie Campbell and Glen Henson on clinical outcomes. In community, Holly Emery presented her research on MS and self-concept, while Chris Gumley and Viv Jones lent their expertise to a further panel discussion on consumer involvement in research.

The conference presented a wonderful opportunity to exchange scientific thought and investigation and for researchers and the MS community to network. It was a huge success, and we'd like to thank MS Australia for hosting this event.

Some of our representatives at the Progress in MS Research Conference in Perth.  Top to bottom: Amin Zarghami; Dr Nicholas Blackburn & Dr Anna Ritchie; Chris Gumley & Viv Jones (fourth and fifth from left); Professor Bruce Taylor (far right); Dr Valery Fuh-Ngwa.

Photo credit (photos 2, 3, 4): MS Australia

Conference commitments

MS Research Flagship staff and students are a busy bunch. If there's a conference to attend, chair or speak at, chances are we'll be involved in some capacity!

Here are just a few examples of Flagship representatives out and about in the last few months:

• Dr Julie Campbell, Glen Henson and Dr Ting Zhao spoke at the Australian Health Economics Society conference in Adelaide in September 
• Professor Ingrid van der Mei and Dr Alice Saul presented and Natasha Stevens looked after our trade table at the MS Nurses Australasia Conference in Adelaide in October
• 20 staff and students participated in MS Australia's Progress in MS Research Conference in Perth in November
• Alastair Fortune spoke at the Australasian Neuroscience Society 41st Annual Scientific Meeting in Brisbane in December

Dr Ting Zhao speaking at the Australian Health Economics Society conference in Adelaide

Natasha Stevens at our trade table at the MS Nurses Australasia Conference in Adelaide

Flagship staff welcoming visitors to our trade table at the Progress in MS Research Conference in Perth

Alastair Fortune presenting at the Australasian Neuroscience Society 41st Annual Scientific Meeting in Brisbane

Australian MS Longitudinal Study

Around this time each year, the Australian MS Longitudinal Study (AMSLS) runs its regular surveys that generate the data underpinning the MS research from the study.

The Disease Course Survey runs annually to capture relapses, changes in MS symptoms, MS disease modifying therapies and general quality of life.

This is paired with the alternating National Employment Survey (currently running) and Lifestyle and Environment Survey. These two surveys provide the ongoing story of the impact MS can have on people’s employment path and important data on lifestyle factors such as diet, exercise, sun exposure, social support and other medical conditions.

More information

Want to know what else the AMSLS has focused on recently?

🌐 Go to the AMSLS 2023 Newsletter

Get involved

If you’re living in Australia and aged 18 or over, register with the AMSLS today and help make a difference.

The AMSLS is a partnership between Menzies Institute for Medical Research and MS Australia

TAURUS 2 is funded by the Australian Government and the Irene Phelps Charitable Trust

The MS Genetics Study is funded by the Australian Government's Medical Research Future Fund

Why consumer involvement?

The different perspectives and lived experiences that consumers bring to research improves its quality, relevance and impact, which is why consumer and community involvement (CCI) underpins every aspect of the MS Research Flagship's operations and projects.

To illustrate this, we've asked consumers and researchers who have embraced CCI to share their experience.

This month we hear from our Consumer and Community Reference Committee (C&CRC) Chair, Chris Gumley.

“Getting involved in research projects has given me a deeper understanding and appreciation of the 'research world' and the importance of consumer involvement. Whether it's comprehending researchers' project explanations or reviewing draft documents for clarity and accessibility, their dedication and respect for consumer involvement are clear.

It's a privilege to contribute to a team striving for shared goals: enhancing understanding of MS, improving quality of life through research discoveries, and ultimately striving to finding a cure for current and future generations.  As a consumer, being involved and seeing all the research going on gives me hope.”

Chris Gumley, C&CRC Chair

In their own words

Our researchers' and consumers' testimonials about their experience of CCI in research were so powerful, we decided to film them speaking their own words.

🎥 Play the video

Join our committee

Would you like to get involved in our research and contribute  your lived experience expertise?

The MS Research Flagship's Consumer and Community Reference Committee (C&CRC) is looking for new members.

More information

We are seeking expressions of interest from people who have lived experience of MS or who are carers or supporters of someone living with MS. For more information contact:

📨 MSRF.Enquiries@utas.edu.au

Multimillion dollar NHMRC Ideas Grant

An MS Research Flagship team has been awarded more than $3.5 million ($3,653,278.55 to be exact) for important research into what causes MS onset and progression.

The research team, led by chief investigators Professor Kaylene Young, Dr Jessica Fletcher and Dr Nicholas Blackburn, will be determining how brain cells are affected by gene mutations carried by people with MS.

The new research builds on the team's ongoing work studying families with an unusually high incidence of MS.

Academic promotions

Dr Jessica Fletcher and Dr Nicholas Blackburn, Senior Research Fellows, have been promoted to Level C in the University of Tasmania's second academic promotion round for 2023.

Understanding Multiple Sclerosis

Course at a glance

• Opens: 11th March 2024
• Duration: 6 weeks
• Closes: 13th May 2023, 5pm (AEDT)
• Effort: 2 hours per week
• Completion certificate: Yes
• Cost: FREE

The Understanding MS massive open online course is supported by MS Plus, MS Australia and the Medical Research Future Fund.

We would like to thank Associate Professor Des Graham who recently resigned from his role as the inaugural Chair and member of the C&CRC. During his four years as Chair he helped move the MS Research Flagship from a model of 'good intentions' around the importance of consumer and community involvement in research to one of 'best practice'. Des' professional and lived experience contributions have been a great benefit to the committee and he will be deeply missed by its members. He remains an important member of the Flagship's Steering Committee.

Associate Professor Des Graham

Welcome to Mark Jablonski who recently joined the C&CRC.

Mark has nearly 30 years’ experience in executive administration, office management and project management, primarily as an Executive Assistant. He has supported executives in nutrition and maritime platforms sciences, alcohol and drug addiction services, and the Australian Antarctic Science Program.

Congratulations to Chris Gumley and Dr Anna Ritchie who were unanimously endorsed as C&CRC Chair and Deputy Chair respectively.

Chris joined the C&CRC at its inception in 2019 and was appointed as its inaugural deputy chair in August 2021. She is also a member of the Flagship's Steering Committee. You may recognise Chris from her starring role in the Understanding MS massive open online course 'lived experience' videos.

Anna joined the C&CRC in 2021 after attending the Flagship's Research with Connections event that year. Anna practiced as a GP until her MS diagnosis in 2020. She attained further qualifications in women's health and has many years' experience in this field working at Family Planning Tasmania.

Mark Jablonski

(L-R) Anna Ritchie and Chris Gumley

Our Consumer & Community Reference Committee

The MS Research Flagship would like to wish you all a wonderful festive season and a happy new year.

See you in 2024!