Australian MS Longitudinal Study (AMSLS)
The Australian MS Longitudinal Study (AMSLS) is a survey-based research study that has been running since 2001 and now has over 3000 people completing research surveys each year. The study is designed to provide real life data about MS, which can be used by all MS medical and support services to effect change for the better for those with MS, their families and carers.
The AMSLS is one of MS Research Australia’s collaborative research platforms. The Study is a partnership between MS Research Australia and the Menzies Institute for Medical Research (University of Tasmania) and all projects are approved by the AMSLS steering committee, which includes representatives from people with MS, the MS societies, MS nurses, neurologists and MS Research Australia.
We encourage all Australians with MS over 18 years of age to register with the study and share their story. Enquiries from researchers wishing to collaborate or utilise this research platform are also welcome.
If you are a person with MS and have any question or would like further information please contact the Australian MS Longitudinal Study team.
Australian MS Longitudinal Study – Steering Committee Members
Dr Elizabeth MacDonald (Chair) – Rehabilitation physician, St Vincents Hospital Melbourne and Epworth Rehabilitation Camberwell; Chair MS Research Australia Research Management Council Social and Applied Research Subcommittee
Associate Professor Ingrid van der Mei – Australian Research Council Future Fellow; AMSLS Project Manager, Menzies Institute for Medical Research
Dr Mary Webb – Person affected by MS; MS Australia National Advocate
Suzanne Hadley – Person affected by MS; MS Australia National Advocate
Deidre MacKechnie – Chief Executive Officer, MS Australia (representing MS Australia, and state MS Society CEOs)
Belinda Bardsley – MS Nurse & Research Manager, Austin Hospital, Melbourne, VIC; President MS Nurses Australasia
Sue Shapland – General Manager, Member Services, MS Society of WA; representative MS Societies National Services Leadership Group
Dr Julia Morahan – Head of Research, MS Research Australia
As at January 2020
Regardless of who you are, lifestyle choices, such as diet and exercise, can have an impact on your overall wellbeing. For those with MS, finding ways to maintain healthy choices when dealing with fatigue or other physical symptoms at the same time can be challenging.
We have several current projects focused on lifestyle factors people can control themselves, including looking into the effects of the “SNAP” factors (smoking, nutrition, alcohol and physical activity) on symptoms severity and quality of life, and what factors influence how much exercise people do and what types of exercise they are choosing to do.
Frequently, if you speak to someone with MS they will tell you that MS is not the only medical condition they are dealing with. With MS itself affecting everyone differently, further incorporating a range of other medical conditions in an effective treatment plan becomes incredibly challenging for health care providers.
We are looking into the presence of other medical conditions alongside MS, whether they occur before or after MS, which of these have the biggest impact on quality of life, and how they impact common MS symptoms. This information will be beneficial to guide the management of people with MS.
With the majority of people being diagnosed with MS at a time where they are just starting to gather momentum in their chosen career, the need to support people with MS to remain happy and productive in the workforce has been a long-term focus for the AMSLS (see key findings).
With longitudinal data available, we can examine people’s long-term work experiences, including the interplay between disclosure of MS at work, support at work, and the intention to quit, and what more can be done to assist people in reaping the best possible personal and social benefits from active participation in the workforce.
Over the last few years there has been an increasing number of people wishing to take more control over their own health and wellbeing. The InforMS system is being developed to provide people with the tools to help manage not just MS, but their health in general.
Sleep is essential to our functioning, but MS can adversely impact sleep, which then has flow on effects for other areas of life. We are quantifying how many people have issues with sleep, the factors that might influence sleep, and any resultant impacts on quality of life, daily functioning and other symptoms.
With MS nurses possessing a level of understanding about MS and its management that is often unmatched by the wider health care community, their availability in many clinics around Australia is an underestimated resource.
In collaboration with MS Australia, we are looking into how many people have access to an MS nurse, and how those nurses influence the care of someone with MS. The data will inform service planning for MS nurses around Australia.
With twice as many people with MS affected by anxiety and depression than the general population, we are examining whether people with MS are appropriately treated for depression and whether anti-depressants potentially have a positive effect on the progression of the disease.