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Menzies Institute for Medical Research
MS Research Flagship
Newsletter
December 2022
The MS Research Flagship
The MS Research Flagship is a Flagship program of the University of Tasmania, College of Health and Medicine and was established from a long history of multiple sclerosis (MS) research at the Menzies Institute for Medical Research. Menzies has proudly been at the forefront of research advancements in MS for over 25 years.
CONSUMER INVOLVEMENT
Research buddies Nick Blackburn & Anna Ritchie
Meet research buddies Anna and Nick
The importance of involving consumers in research is increasingly being acknowledged. In fact most funders now require genuine consumer and community involvement to be evident in funding submissions.
One such opportunity for consumer involvement is the research buddy system, which is being utilised by MS Research Flagship’s genetics researcher Dr Nick Blackburn.
Dr Blackburn leads the MS Family Study, which recruits and studies the genes of families that have multiple close relatives living with MS. The hope is to identify shared genetic factors that are contributing in a big way to their overall risk of developing MS.
Anna Ritchie, who lives with MS, is Dr Blackburn’s research buddy and has been involved in various facets of the study from finessing the grant application through to helping with communicating findings.
“I ask Nick questions about his research, which prompts him to have to translate it for me, and therefore in a wider sense he practices translating it for the community,” says Anna.
“I’ve also been able to share my MS journey as it happens, giving Nick specific insight into the condition and its various challenges,” she adds.
Dr Blackburn points out that there’s only so much that can be gleaned from reading about MS research, whereas having a research buddy provides real-world context.
“I benefit from Anna helping me see how my research directly or indirectly impacts people with MS and how a person with MS might feel about some of the findings,” he says.
“I also benefit from Anna’s lived experience, the day to day side of MS that doesn’t necessarily come across in research articles. This in turn influences how I approach my research, and the questions I’m asking,” he adds.
Ultimately – and crucially – consumers benefit from this arrangement.
“A research buddy partnership highlights to the researcher what they are trying to and can achieve for the MS community,” explains Anna.
“It improves communication of the research process and outcomes to the community. And it may even spark new ideas for directions to pursue as the relationship continues,” she says.
How to get involved
If you live with MS and would like to be a research buddy, please get in touch.
IT'S A WRAP
MS Research Flagship strategy workshop
In September we held our annual strategy workshop at the Vibe hotel in Hobart, with more than 50 Flagship members in attendance.
The fantastic turn out and enthusiastic contributions from all involved made for a very rewarding and productive day.
The MS Research Flagship leadership team demonstrated excellent progress against the strategic plan (2021-2026) in the first twelve months and has a clear vision of priorities moving forward.
A shared commitment to the Flagship governance, sustainability, consumer involvement and research impact was evident. Strengthening existing partnerships and relationships whilst exploring new collaborations, teaching, philanthropic and other funding opportunities are all key to continued success.
A huge thank you to everyone who was able to participate on the day.
(Top) Scientific Advisory Committee (David Mackey, Stephen Tong, Dominique Cadilhac, Sharlene Brown, Tracey Dickson, Pamela McCombe); (Middle) Professor Kaylene Young presents to the group; (Bottom) Breakout group discussion (Meg Denham, Chris Gumley, Angela Land, Geoffrey Donnan, Anna Ritchie)
MAKING HEADLINES
Groundbreaking trial launches
The Flagship's groundbreaking clinical trial assessing the effects of magnetic brain stimulation (MBS) on multiple sclerosis (MS) has welcomed its first participant.
The phase two trial, known as TAURUS.2, has now opened its doors to participants at the Menzies Institute for Medical Research, and will soon be rolled out across six sites nationally.
It follows on from a phase one trial which found that MBS was safe and has significant potential to sustain brain insulation in MS.
The MBS delivered to participants will non-invasively activate nerve cells in the brain to subtly change their activity. Trial researchers will measure the effect of MBS on MS symptoms including upper and lower limb function, cognition, fatigue, anxiety, depression, sleep and quality of life.
They will also use advanced brain imaging techniques such as MRI to assess whether MBS effectively increases brain myelin levels in people with MS.
The trial launch attracted considerable media attention. Interviews with lead investigators Professor Kaylene Young and Professor Bruce Taylor and phase one trial participant Meg Denham of our Consumer & Community Reference Committee appeared across a range of platforms including radio, print and TV.
For more information about the trial, watch our video for participants here: bit.ly/3ubVbIt
The TAURUS 2 study is funded by the Australian government and the Irene Phelps Charitable Trust
HOT OFF THE PRESS
Natalizumab: a superior DMT?
Disease modifying therapy (DMT) natalizumab is more effective for treating a range of MS symptoms compared with other DMTs, according to new research.
The study, published in the prestigious Journal of Neurology, Neurosurgery & Psychiatry, found that natalizumab (brand name Tysabri) was associated with superior improvement over time in sensory symptoms, feelings of anxiety, sexual dysfunction, bladder problems, difficulty with balance and vision problems for people living with MS.
Researchers also found that, compared with other DMTs, natalizumab was associated with a significantly slower rate of deterioration in health and employment outcomes. This included a greater impact on self-assessed disease progression and reduced loss of work productivity, mainly due to decreased absenteeism. They noted that this latest information can contribute to the treatment selection decision-making process of neurologists and people with MS.
In this observational study, researchers collected and analysed data about DMT use and health effects reported by 1,382 participants of the Australian MS Longitudinal Study between 2015 and 2017.
They compared the effects of those using natalizumab with those using other DMTs over this time in relation to MS symptom severity, health-related quality of life, disability, self-assessed disease progression and employment outcomes.
While clinical trials have shown in the past that natalizumab is highly effective in slowing MS disability progression and reducing disease activity on magnetic resonance imaging scans, this data shows that these effects are accompanied by the personal experiences reported by people living with MS.
The finding that natalizumab had beneficial effects on employment outcomes will further improve the cost-effectiveness of this medication.
Read the full article here:
The Australian MS Longitudinal Study is a partnership between the Menzies Institute for Medical Research and MS Australia
RESEARCH PROJECT SPOTLIGHT
MS genetics study
Our study seeking to understand the role Epstein Barr virus (EBV) plays in causing MS is now underway at the Menzies Institute for Medical Research.
EBV is one of the most common human viruses in the world. Spread primarily through saliva — kissing, sharing a glass or food utensils, for example — it’s probably best known for causing infectious mononucleosis (glandular fever).
EBV is now recognised as a major risk factor for the development of MS, to the extent that nearly 100% of people with MS have previously been infected with it. However why only a very small number of all people infected with EBV go on to develop MS remains unknown.
As with all viruses, EBV consists of many different genetic variants, and some variants may influence the risk of developing MS while others do not. Our study aims to identify specific genetic biomarkers associated with onset and progression of MS.
In most people exposed to EBV, the virus replicates and intermittently sheds in saliva. Collecting saliva samples from people with MS and without MS (controls) will allow our research team (pictured) to determine whether people with MS carry different EBV serotypes compared to controls.
If there is a difference, this will facilitate the development of vaccines to specific genotypes of EBV that are MS-associated, which may have major implications for reducing MS risk.
Find out more
The study is continuing to recruit volunteers. If you’re interested in participating please get in touch.
(Top to bottom) MS genetics study research team Professor Bruce Taylor, Dr Chhavi Asthana and Dr Yuan Zhou
The MS genetics study is in collaboration with QIMR Berghofer, The University of Queensland and Genome Institute of Singapore
MS TRIALS NOW RECRUITING
AWARDS & ACCOLADES
Professor Bruce Taylor has been awarded a prestigious fellowship with the Australian Academy of Health and Medical Sciences.
Each year, the best and brightest minds in Australia are elected to join the Academy in recognition of their outstanding achievements and exceptional, ongoing contributions in the field of medical and health sciences.
Candidates for fellowship must meet certain criteria, including national and international recognition for excellence in health and medical science, contribution to the profession through leadership and mentorship and improving public understanding and promoting health and medical science in the broader community.
Professor Taylor was specifically recognised for how his research has transformed our understanding of the personal, environmental and genetic factors that contribute to the onset of MS, and why its progression is highly variable.
Dr Suzi Claflin won the Early Career Researcher (ECR) Best Paper of the Year award from the Health Services Association of Australia and New Zealand (HSRAANZ) for her paper 'The effect of national disease-modifying therapy subsidy policy on long-term disability outcomes in people with multiple sclerosis'. This research, which we featured in our April newsletter, was published in Multiple Sclerosis Journal.
Dr Carlie Cullen received the Australasian Neuroscience Society Paxinos-Watson Award 2022 for the most significant paper by a member of the Society in 2021. Dr Cullen's paper 'Nodal and periaxonal plasticities modulate action potential conduction in the adult mouse brain' was co-authored by Professor Kaylene Young (pictured here with Dr Cullen).
Top 10 massive open online course
Our Understanding MS massive open online course (MOOC), developed by Menzies in partnership with MS Plus, has been ranked the #10 best MOOC of all time in the 2022 Class Central Rankings.
These rankings are based on 200,000 reviews, and comprise 250 courses with 52 million enrollments combined.
You can enrol now in the March 2023 course here: bit.ly/3TBfTN8
MS Australia President's Medal
Professor Bruce Taylor and Dr Suzi Claflin were selected by the President of MS Australia, Associate Professor Des Graham, to receive the MS Australia President's Medal, as part of the organisation's 50th anniversary celebrations.
The medal is recognition of each recipient's unwavering and passionate dedication, selfless service and many outstanding contributions towards the MS movement in Australia.
The Menzies Institute for Medical Research also received a medal for its contributions as an organisation towards the MS movement in Australia.
THE FLAGSHIP IN NUMBERS
Consumer and community involvement in 2022
7,104 people from more than 110 countries enrolled in the Understanding MS massive open online course. The September iteration of the course included new lived experience video content about stem cell transplantation and pregnancy from people living with MS
17 people from our MS community were involved as project reviewers or partners across 12 different Flagship research projects
Members of our Consumer & Community Reference Committee provided input and advice on 14 separate occasions across the year, contributing more than 320 hours of valuable consumer involvement to the Flagship’s research strategy, operation, translation and impact
FAREWELL 2022
From our Flagship: a happy new year!
The MS Research Flagship would like to wish you all a wonderful festive season and a happy new year. See you in 2023!
