MS Research Flagship
Newsletter

InforMS: a new MS management app co-designed by people with MS

People with MS often see multiple healthcare professionals. There are MRIs, symptoms that can come and go, changes to medications, new specialists and test results. It’s a lot to keep track of, especially if you also have MS fatigue and brain fog.

In 2020, an Australian team began developing an MS management app called InforMS.

InforMS is designed to help people manage their MS, creating a “one-stop shop” to hold their health information. It will allow people to track their MS and their healthcare more easily, to help make shared decisions with their healthcare team.

Melissa Quirk and Sonia Marcon are two of the people with MS who have been embedded in the development of InforMS from the very beginning, and throughout its design and user testing.

“In the MS community we often say ‘Nothing about us, without us.’ InforMS has been a great success in this regard,” said Sonia. 

“By working directly with those who have MS, InforMS is specifically tailored in every way. From content to accessibility to results, InforMS will change the way information is gathered, stored and shared,” she said.

“It's so simple, but it will be a godsend," said Melissa. "Having the My Care Team Feature will be so handy, because I really like my doctors to be talking to each other."

"I think my favourite part of the system is the graphs [of MS symptoms] because I can look back and easily see how things are tracking in a visual way, and that resonates with me,” she added.

InforMS is in the final stages of development by researchers at the Menzies Institute for Medical Research in partnership with MS Australia, Monash University, Healthcare Software, healthcare professionals and most importantly, people with MS. It will be launched in mid-2024.

This is an excerpt from an MS Australia news item published in March 2024, republished here with permission. Read the full article.

InforMS is jointly funded by the National Health and Medical Research Council (NHMRC) and MS Australia.

Research with Connections 2024

Research with Connections, the MS Research Flagship's premier annual event, is fast approaching. It kicks off at 9am on Friday 28th June. To whet your appetite here's an overview of what's in store:

09:00 Registration and refreshments
09:30 Event opening remarks
10:00 Session 1: Online resources and digital health
12:00 Lunch
13:00 Session 2: Understanding the causes of MS and the quest for new treatments
14:00 Session 3: The future of MS research and national collaborations
14:45 Afternoon tea
15:15 Q&A
16:00 Event wrap and close

In addition to presentations from Flagship researchers attendees will be treated to a lived experience presentation from Meg Denham of our Consumer & Community Reference Committee, an update on the PLATYPUS clinical trial from MS Australia's head of research Dr Julia Morahan and a foray into Australian National University's Our Health in Our Hands Initiative from our keynote speaker Associate Professor Anne Brüstle.

Want to be in the room where it happens? Get your FREE tickets today!

This event is funded by the Australian Government, Medical Research Future Fund 

Agfest 2024

Postdoctoral research fellow Dr Chhavi Asthana and PhD student Eleanor Sabey along with the Flagship's Communications Officer Rachel Clemons, recently braved arctic temperatures to represent the Flagship at Agfest, a globally-recognised annual agricultural field event that runs for three days in May in Carrick, Tasmania.

They were part of the 235-strong contingent of University of Tasmania (UTAS) staff members who worked at the event, which attracted about 54,000 patrons this year.

It was a fantastic opportunity to showcase how the Flagship contributes to Tasmania and the world with its MS research, and to promote GEMS, our MS Genetics Study, in particular.

A highlight was the engagement by people of all ages in our 'speed brain building' activity, one of 30+ hands on activities on offer in the UTAS pavilion, which saw 22,000 people move through it across the duration of the event. 

The days were filled with conversations and meaningful interactions with Agfest's many visitors, and Chhavi, Eleanor and Rachel thoroughly enjoyed connecting with people in the community.  

Top to bottom: Dr Chhavi Asthana, Eleanor Sabey and Rachel Clemons at Agfest 2024

World MS Day Seminar: 'Diagnosis'

On 30th May Menzies staff and members of the wider MS community were invited to attend a special seminar in honour of World MS Day.

Researchers from the MS Research Flagship presented four talks on topics relating to MS diagnosis, the theme for World MS Day 2024.

Dr Foong Yi Chao started the session with a fascinating presentation about the complexities of making a clinical diagnosis of MS.

Dr Laura Laslett's presentation on the time to diagnosis featured new data released in MS Australia's World MS Day ‘My Diagnosis’ Report. The data, collated from the Australian MS Longitudinal Study and analysed by Menzies researchers, shows the average time from onset of symptoms to an MS diagnosis is nearly four years.

Dr Yuan Zhou spoke about biomarkers to aid MS diagnosis, a case in point being GEMS, his MS genetics study that aims to identify whether there are specific Epstein-Barr virus genetic variations or strains that lead to greater MS risk​.

Dr Nicholas Blackburn rounded out the seminar talking about the variable and unpredictable symptoms of MS, and the fact that no two people will experience exactly the same symptoms, and how this impacts misdiagnosis and multimorbidity.

The seminar, chaired by Professor Ingrid van der Mei, was followed by an enjoyable afternoon tea where our researchers and MS community members were able to catch up over cake and a cuppa.

Clockwise from top left: Dr Foong Yi Chao, Dr Laura Laslett, Dr Yuan Zhou and Dr Nicholas Blackburn

Our World MS Day seminar presenters with chair Professor Ingrid van der Mei (far right).

The May 50K

A huge thank you to the small but mighty team of people who participated in this year's The May 50K challenge.

Combined, our MS Research Flagship team moved more than 550km and raised $3,200 to support research into the prevention and treatment of MS and finding a cure for MS to change lives.

AusImmune Longitudinal Study

The AusImmune Longitudinal Study (AusLong for short) was initiated in 2003 at the Australian National University. Now based at the Menzies Institute for Medical Research, the study has followed participants for up to 21 years and is one of the longest and most impactful studies globally of people living with MS. 

Led by the MS Research Flagship’s Professor Bruce Taylor, AusLong initially focused on environmental and personal factors related to risk of developing MS. Significant findings include links between MS and factors such as low sunlight exposure, exposure to viruses including Epstein Barr Virus (EBV), and dietary habits such as following the Mediterranean diet. 

Practical outcomes

The study also sheds light on genetic and lifestyle factors influencing MS progression and employment outcomes. For instance the study found that fatigue was one of the greatest barriers to being able to return to work.

This has led to the development of MS WorkSmart, a clinical trial led by Professor Ingrid van der Mei. MS WorkSmart aims to assist people with MS to remain productive in the workforce, with potentially significant health and economic impacts.

Ongoing impact

With more than 45 scientific publications and international recognition, AusLong’s impact extends to clinical guidelines and health policies worldwide. It has also fostered academic development, supporting numerous PhD students and postdoctoral fellows. 

Dedicated participants

The study's continued success is attributed to the dedication of participants (75% of current participants have been with the study since its inception) and the hard work of the research team. 

AusLong is no longer recruiting but continues to follow each participant for an annual telephone review, or 15-year face-to-face review, in Tasmania, Victoria, New South Wales and Queensland. 

Ongoing national and international collaborations promise further insights into MS and its management.

More information

Want to know more? Check out these:

🌐 Research publications from AusImmune/AusLong studies

AusLong is supported by funding from the Australian Government, National Health and Medical Research Council (NHMRC)

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 issue we hear from the Flagship's Dr Laura Laslett.

“My project involved collecting data on sleep in people with MS using research grade smart watches, and I received input from consumers as part of the planning process. 

They gave me a huge amount of feedback on a range of aspects and asked me a lot of questions, mostly on things I wouldn’t have expected. Some I could answer, but for others I needed to go away and source extra information.

The input I received from consumers made my existing project idea better and gave me fresh ideas for new research questions.

An unexpected benefit of involving consumers in my research was how excited they were about my project.

As researchers, the rewards for our work are often way off into the distance (if there are any at all). Connecting with people in the community who have the potential to benefit from the work that I do - and see how excited they were about the potential benefits my work might bring - gave me energy to keep going with the idea.

It’s something I can remember when the going gets tough.”

Dr Laura Laslett

Research priority setting workshop

In early May our Consumer and Community Reference Committee (C&CRC) members and representative Flagship researchers, about 30 people in total, attended two days of workshops designed to help improve research outcomes. The workshops were facilitated by Debra Langridge, head of the CCI program at the Western Australia Health Translation Network.

On the first day — a masterclass in consumer and community involvement (CCI) in research — attendees were first given an overview of the foundations of CCI and the research environment. The day went on to focus on plain language summaries and grant reviews in the context of CCI.

Day two was a research priority setting partnership workshop. Using the priorities identified in MS Australia’s 2021 priority setting exercise as a starting point, combined with the 2022 National MS Society (USA, Canada, UK) Pathways to Cure survey, our MS consumers and researchers worked in groups to flesh out and rank the research deemed to be needed most.

Over the course of a day filled with robust discussions, 10 priority areas from a Tasmanian perspective were identified, and the session wrapped up with a vision of work to be done.  

Going forward, outcomes and data from the workshop will be used in publications, grant submissions and, importantly, future research direction and projects.

Workshop facilitator Debra Langridge (far right) with the C&CRC members who attended our priority setting workshop in May

Menzies excellence awards

In April the Menzies Institute for Medical Research held its annual excellence awards which celebrate the ten best research papers published in the previous year.

Three of the ten award recipients were MS Research Flagship staff members.

• Dr Julie Campbell won a 'Ten of the best' award for Using qualitative free-text data to investigate the lived experience of the COVID-19 pandemic for a large cohort of Australians with different multiple sclerosis related disability levels, Journal of Neurology, Neurosurgery & Psychiatry
• Professor Andrew Palmer won a 'Ten of the best' award for Exploring the cost-effectiveness of EBV vaccination to prevent multiple sclerosis in an Australian setting, Journal of Neurology, Neurosurgery & Psychiatry

• Dr Xin Lin won a 'Best of the best' award for Genetically determined serum serine levels has a novel causal effect on multiple sclerosis risk and predicts disability progression, Journal of Neurology, Neurosurgery & Psychiatry

Left to right: Professor Andrew Palmer, Professor Bruce Taylor (collecting a certificate on behalf of Dr Xin Lin, inset) and Dr Julie Campbell

Consumer & Community Reference Committee

Our C&CRC recently endorsed three new members.

Lynda Hanlon has lived with MS for the past 17 years. She has a drive to raise awareness of MS in our communities, advocate for equal access, and in the long-term increase knowledge about MS and improve quality of life for those living with MS. She currently represents the needs of the MS community on the Hobart City Council's Access Committee. Over the years Lynda has attended MS peer support groups and participated in various research studies.

Sean O'Moore, a proud Irishman, was diagnosed with MS in 2005. At that time he was based in Sydney but shortly after he and his family decided to move to a cooler climate. He now resides in Hobart and lives with secondary progressive MS. Sean is an active member of the MS community in Tasmania, regularly participating in peer support groups with a particular interest in MS peer support for men. He believes in the importance of staying connected with the community and contributing to research to continue the quest for improved quality of life for people with MS and ultimately a cure.

Esther Pregnell is a health care professional, graduating from UTAS in 2018 with a Bachelor of Nursing. She has since completed further studies in Wound Care Management and Acute Care Nursing. Esther was diagnosed with relapsing remitting MS in 2022. Whilst she recognises that everyone experiences MS differently, she is in the unique position of also having a close family member who lives with MS and being a health care professional that has cared for people with MS. Esther believes that being part of the committee is a perfect opportunity for her to contribute to a field that cannot possibly work without real lived experience.

Lynda Hanlon

Sean O'Moore

Esther Pregnell

Scientific Advisory Committee

We would like to welcome Professor David Mackey as the new chair of our Scientific Advisory Committee and member of our Steering Committee.

Kerri Tomlin and Meg Denham, two long term members of our C&CRC, are coming to the end of their tenure in July.

Both have been amazing contributors to various research projects of the Flagship and we are sure their involvement with Menzies and the Flagship will continue and will always be welcome!  

Here, Meg and Kerri reflect on their time with the committee:

“I’ve been constantly inspired by the passion and dedication of the researchers and their incredible generosity and willingness to involve us in every aspect of their work”

— Meg Denham

"It has been exciting and empowering to share in a two-way learning process about the high-level research Menzies does and to help make that research more meaningful to the MS community. This group is now a national gold star example in consumer contribution to research. What a privilege."

— Kerri Tomlin

Meg Denham

Kerri Tomlin

We would also like to farewell Professor Stephen Tong from our Scientific Advisory Committee. We thank him for his dedication and significant contributions throughout his tenure.

Understanding MS massive open online course (MOOC)

Check out these vital stats from the March 2024 iteration of our Understanding MS MOOC:

• 4322 enrolments, the largest intake since the September 2021 iteration
• 41% completion rate (the average for MOOCs is 6-10%)
• 113 countries, the geographical spread of participants in March 2024
• 96% of participants who completed the feedback survey would recommend it to others

Enrolments for the September 2024 iteration are now open.