In this issue we go behind the scenes of the Australian MS Longitudinal Study, catch up with a former PhD student at the WHO in Zambia, invite you to join us at Agfest in May and our Research with Connections event in June and more.
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Menzies Institute for Medical Research
MS Research Flagship
Newsletter
March 2024
The MS Research Flagship
The MS Research Flagship is a Flagship program of the Menzies Institute for Medical Research, University of Tasmania, and was established from a long history of multiple sclerosis (MS) research at Menzies. Menzies has proudly been at the forefront of research advancements in MS for more than 30 years.
MAKING HEADLINES
Labcoat legends
Professor Kaylene Young's research team was one of seven from the University of Tasmania (UTAS) — and one of four from Menzies — to be awarded highly competitive National Health and Medical Research Council (NHMRC) Ideas Grants. Collectively, they were awarded a record breaking $14.8 million in funding for medical research projects that will target some of Tasmania's most pressing health concerns, including MS.
This news was announced just in time for us to mention in our previous issue, however we couldn't resist sharing again along with the fabulous headline and photo on the front page of Tasmania's The Mercury newspaper.
Professor Kaylene Young (front, seated) on the front page of Tasmania's The Mercury newspaper
Read more about Professor Young's project, which will determine how brain cells are affected by gene mutations carried by people with MS, in the:
COMING SOON
MARCH: Understanding MS
Understanding MS is an award-winning online course that's demonstrated to improve understanding and awareness of MS, health literacy and self-efficacy.
More than 40,000 people from 170+ countries have enrolled in this free course to date.
Enrolments are open until 22 March.
Understanding MS is supported by MS Plus, MS Australia and the Medical Research Future Fund.
MAY: Agfest 2024
In early May a few us from the MS Research Flagship will be grabbing our gumboots and pitching up to the paddocks in Carrick, Tasmania to spruik science at Agfest 2024.
We'll be sharing details about GEMS, our new MS genetics study that's investigating the connection between Epstein-Barr virus and MS. We will also host fun and educational activities for both kids and adults.
If you're coming along, please drop by the 'Healthy Futures' space in the University of Tasmania pavilion and say hi!
JUNE: Research with Connections 2024
PROJECT TEAM SPOTLIGHT
Australian MS Longitudinal Study
People likely know the Australian MS Longitudinal Study (AMSLS) is a long-standing survey-based research study that has more than 2,500 people completing research surveys annually. People may also know that the data collected is used by policy makers and MS medical and support services to create practical change that improves the lives of people with MS — a recent example being the powerful advocacy work for more MS nurses happening off the back of the AMSLS MS Nurses report.
Less well known are the groups behind the scenes of the AMSLS, so here’s a sneak peak.
Overseeing the AMSLS is a steering committee composed of seven diverse experts, including people with MS, representatives from the MS state organisations, MS nurses, neurologists, MS Australia and of course our very own Professor Ingrid van der Mei, AMSLS Project Director.
Expert collaborators at other universities in Australia can request AMSLS data, with projects completed on employment, physical activity, modifiable lifestyle factors, family planning, psychology and oral health. It is the MS Research Flagship’s Dr Laura Laslett who is tasked with meticulously preparing the data to be sent to these collaborators. AMSLS data is also used by our own researchers in projects on MS and sleep, pain, health economics, work productivity loss, and other medical conditions.
Dr Laura Laslett (left) & Professor Ingrid van der Mei
At the AMSLS coal face are Kirsty Hawkes, Carol Hurst and Hilary Waugh, three part time research officers who administer the AMSLS alongside the dedicated support of three long-term volunteers, who assist with general study administration and paper survey processing.
Not only do the AMSLS research officers assist with survey design and distribution and sending verified data to researchers, but they also have the mammoth task of looking after the 2,500+ participants (roughly 75% online and 25% paper based, with about 30 who participate via phone only). This role encompasses everything from study sign-up and communications through to assistance with survey completion and queries.
Our AMSLS researchers, administrative staff and volunteers. They're a happy bunch!
“We’re the ones who get to interact with our participants. This means we often feel close to, and quite protective of them, as we hear the real-life experiences of the topics covered in the surveys,” says Kirsty Hawkes, AMSLS Liaison Officer & Data Manager.
“It’s impossible to capture every detail of people’s experiences in a few survey questions, but the nuanced stories and comments we get back from participants are passed on to the researchers, and often do generate new ideas for investigation,” she adds.
Kirsty describes how most people giving up their time to complete the surveys are incredibly generous by nature.
“A lovely part of the job is that survey participants will often share funny stories with the team, such as the participant who told us she’s had people scream “BOMBER” and run out of shops when she’s had her MS cooling vest on,” Kirsty recalls.
Get involved
If you live with MS and would like to participate in the AMSLS contact:
If you're a researcher and would like to collaborate with the platform contact:
The AMSLS is a partnership between Menzies Institute for Medical Research and MS Australia
WHERE ARE THEY NOW?
PhD students post-Flagship
PhD students are integral to research at the Flagship, and we couldn’t achieve what we do without them. Some have continued with the Flagship after gaining their doctorate and we regularly report on their work in these pages. But what about those who move on — where are they now?
We decided to find out where our phenomenal PhD students have ended up.
Dr Barnabas Bessing
Barnabas Bessing
From when he started work at the Flagship in early 2019 until he departed at the end of 2021 Barnabas Bessing divided his time between two projects: work productivity in people living with MS and MS education.
Using data from the Australian MS Longitudinal Study (AMSLS), Barnabas established how MS symptom changes can affect work productivity, the work productivity pathways for Australians living with MS, and the impact of work difficulties, work self efficacy and work psychological safety on work productivity.
Barnabas also analysed research data from the Understanding MS massive open online course (MOOC), and published papers on its impact on participant MS knowledge, health literacy, and quality of life, amongst other things.
Today Barnabas is a consultant epidemiologist (surveillance and immunisation coordination) with the World Health Organisation in Zambia. He’s still involved in research, most recently in the areas of polio, measles, neonatal mortality and morbidity, and immunisation.
“I am truly enjoying applying the skills I learnt as a PhD student with the MS Research Flagship. The experience has made my current work so much easier,” Barnabas said.
Keep up with Barnabas on LinkedIn.
STUDIES NOW RECRUITING
Get involved in our GEMS study
Volunteers with and without MS are needed for GEMS, our MS genetics study. Your donations of saliva (and blood) could help us make a difference for people living with MS worldwide.
Participation involves completing a questionnaire, providing three saliva samples and giving a blood sample (optional).
Want to know more? Check out the:
GEMS is funded by the Australian Government's Medical Research Future Fund
Get involved in our TAURUS 2 trial
Are you interested in being part of this exciting research? Check out the:
TAURUS 2 is funded by the Australian Government and the Irene Phelps Charitable Trust
CONSUMER & COMMUNITY INVOLVEMENT IN RESEARCH
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 strategy, operations and research projects.
To illustrate this, we've asked consumers and researchers who have embraced CCI to share their experience.
This month we hear from Bridie Phillips, MS nurse, MS carer and member of our Consumer and Community Reference Committee.
“As a consumer and professional in the MS community, it has been an honour to work alongside the committee and researchers as a team to ensure the interests of our community are considered in research and the results are then presented in a way that is easily understood. This shows the community there is a commitment to ongoing research and hope and keeps me right in the thick of the latest evidence-based studies so I can share this exciting information with family, colleagues, and community.
I have a strong sense of my opinion being valued and respected within this committee and look forward to what’s coming next."
Bridie Phillips
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:
GET INVOLVED
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:
AWARDS & ACCOLADES
Postdoctoral Fellowships
Four of our MS Research Flagship researchers are amongst 17 to receive funding for their cutting-edge projects from MS Australia's latest $4.5m grant round.
Dr Laura Laslett will study the link between poor sleep and MS to understand how changes in sleep patterns affect overall sleep quality in people with MS and improve treatment and management of sleep issues in the MS community.
Dr Jessica Fletcher is investigating why myelin, the coating around nerves, fails to repair in MS, building the knowledge base essential for the development of effective treatments to stop MS disease progression.
Dr Julie Campbell will measure the true economic cost of MS — including the quality of life impact in the years leading up to formal diagnosis of MS and the burden and costs to the informal carers and supporters of people living with MS — with the aim to increase resources for MS.
Dr Xin Lin is integrating multiple biological data types and clinical data to identify MS biomarkers, molecules that reflect MS-specific biological processes and may serve as key targets for diagnostic and therapeutic innovations.
Their grants bring a combined $900,000 in funding for MS research at the Flagship.
Read more about their research projects:
Top to bottom: Dr Laura Laslett, Dr Jessica Fletcher, Dr Julie Campbell and Dr Xin Lin
MS RESEARCH FLAGSHIP IN NUMBERS
Funding for research in 2024
The MS Research Flagship has attracted more than $4.9m in funding for MS research commencing in 2024. This includes the National Health and Medical Research Council Ideas Grant, MS Australia Fellowships and Irene Phelps Family Trust funding for MS Stem.
