Information about the Australian MS Longitudinal Study.

About MS

 Multiple sclerosis is the most common disease of the central nervous system among Australians aged 20-40 years.  During MS there is substantial loss of a natural insulating substance called “myelin” that covers nerve fibres in the brain and spinal cord. The myelin is necessary for normal functioning of the nervous system. 

Symptoms of MS appear in young adulthood and vary greatly across individuals, also for each individual over time, depending on which areas of the brain and spinal cord become damaged.  As MS progresses, it might produce impaired vision, speech difficulties, fatigue, problems with memory and/or cognition, loss of mobility and coordination, or any combination of these.  Paralysis of the limbs and body may occur in severe or deteriorating cases.  A noted feature of MS is the relative unpredictability of clinical course. 

MS usually strikes at a time of life when many people are rearing young families.  Approximately twice as many women as men contract MS.  The difficulties of living with the disease are not purely “medical” or even personal, but also involve the families and carers of people diagnosed with MS.  The psychosocial and economic aspects of MS impact on the wider community. 

· The Australian MS Longitudinal Study

The cause of MS remains unknown, and this has certainly hindered the search for a cure.  There is evidence that the condition occurs only in genetically susceptible people through the action of environmental factors, as yet unknown.  Some of the world’s best evidence for the importance of environmental influences on the development of MS has been found right here in Australia.  There is about 6 times more MS per head of population in Tasmania than there is in North Queensland, with intermediate values for regions in between.  Australia’s remarkable geographical gradient in the prevalence of MS is considered very important by international researchers, because it offers the prospect of finding clues to what causes or exacerbates the disease.  If more were known about the environmental “prognostic factors” that can alter the occurrence and the clinical course of MS, or even factors that make attacks of MS more likely, it would be easier to develop strategies to prevent the disease and its progression. 

The Australian MS Longitudinal [ie, longer term] Study is a nationwide project that will investigate potential “prognostic factors” across the continent’s geographical gradient of MS, and hence make an international scientific contribution to knowledge of the disease that may help point the way to a cure.  As well as that, the Longitudinal Study is a large, multi-disciplinary project that will provide much needed information related to improving the quality of life of people living now with MS.  For example, the Study will investigate what rehabilitation strategies are best for particular sorts of patients and clinical courses of MS, and the optimal ways to maintain a person’s independence (and their employment) after diagnosis.  The Study will look at changes to family circumstances after a member is diagnosed with MS, and how interpersonal relationships and family support networks can best be maintained and protected.  In another example, the Longitudinal Study will carefully examine the economic impact over time of the disease on people with MS, their families and the wider community, with a view to providing much needed data on social disadvantage that accrues during the course of MS. 

The Australian MS Longitudinal Study is owned by MS Australia, the umbrella Society responsible for strategic research into MS in this country.  Experts from many health and allied fields in Australia and overseas have been involved in the planning to ensure that the Australian MS Longitudinal Study is of international quality, with an emphasis on multi-disciplinary teamwork to achieve better life outcomes for people with MS.   The project is part of an international collaborative network on MS, joining with established databases in North America and Europe.   This network is using the latest computer and Internet technologies to produce valuable information on the many important aspects of MS that cannot be solved by short term research studies. 

Initially, the Australian MS Longitudinal Study will involve 2,000 statistically representative volunteers with MS drawn from all geographical areas, who will form the initial “cohort” to be followed up on most aspects of their lives. Strict protection of privacy will apply for the volunteers, their carers and families, and their health care providers.  The initial cohort will gradually be supplemented over time by the addition of newly diagnosed persons in Australia, who will all be invited to participate.  It is anticipated that recruitment of the initial cohort will commence early in 2002, with collection of the basic clinical and demographic data sets immediately thereafter.  The Australian MS Longitudinal Study is a longer-term project designed to answer crucial questions about this chronic disease, but because it is on a nationwide scale the Study is also expected to produce valuable information in the short term through cross-sectional analyses of population-based data.

 · Further Information

 Further information about the Australian MS Longitudinal Study can be obtained from:  

Dr Rex D. Simmons 
Project Manager
Australian MS Longitudinal Study
Level 10 Building 1
Canberra Hospital
PO Box 11
WODEN ACT 2606

 Phone: 02 6244 4228     Fax: 02 6244 3211   Email: [email protected]

 ·        For More Information about MS go to the MS Links page