Australian Multiple Sclerosis Longitudinal Study
INFORMATION SHEET
Multiple sclerosis (MS) is the most common disease of the central nervous system among
Australians aged 20-40 years. During MS, nerve fibres in the brain and spinal cord lose some of
their surrounding myelin, a natural insulating substance, leading to abnormal conduction of nerve
impulses and varying degrees of disability. An increasing number of new treatments are becoming
available for MS, but there is presently no cure.
The Australian MS Longitudinal [ie. long term] Study (AMSLS) is a nationwide project designed
to facilitate new research of potential benefit to people with MS and their families. The research is
performed using carefully designed surveys, developed by qualified professionals working in
various fields of health and service provision relevant to MS. The surveys are completed by people
with MS either online at a secure website or on paper forms mailed to participants with a replypaid envelope. People with MS may complete the surveys themselves or, where necessary, they
may be completed with the help of a family member, friend or carer. The surveys are designed to
be anonymous, using only a secret Study Identification Number that each volunteer with MS
receives on their initial enrolment in the AMSLS (see also the paragraph overleaf on protection of
privacy).
The Australian MS Longitudinal Study encourages researchers with differing types of expertise to
work together to solve the difficulties associated with MS, which is a highly variable condition. In
particular, the AMSLS focuses on practical research designed to provide information that will
gradually improve the life situation of Australians with MS. For example, the AMSLS has asked
people with MS about their usage of MS medications listed on the Prescription Benefit Scheme
(PBS), including their own evaluation of the effectiveness and difficulties (side effects) of these
medications. Such self-report data provide anonymous and useful feedback to the doctors and
other professionals seeking to improve the available treatments for MS. Over time, a condition
like MS can have considerable economic impact on people and their families, and therefore
AMSLS periodically surveys the national economic impact of the illness, with a view to informing
government and other agencies of the needs of Australians with MS. Employment, paid or
voluntary, is identified as a key element in maintaining a sense of participation, boosting
confidence and morale. The AMSLS has made it a priority to collect ongoing, evidence-based
information on the most effective ways to assist Australians with MS stay in the workforce (or to
gain new employment) if they wish to do so. The AMSLS is also interested in quality of life of
Australians with MS, particularly in relation to maintaining independence and managing one’s
overall health effectively in the long term. These examples give an idea of the broad scope and
highly practical nature of the MS research made possible by over three thousand Australians with
MS who have volunteered to assist with the AMSLS.
The Australian MS Longitudinal Study and all data are owned by MS Australia, the non-profit,
national umbrella Society responsible for setting future research directions for MS in this country.
A Supervisory Committee at MS Australia ensures that only useful data are collected in the Study,
and that the burden of supplying data is minimised for every participant.
Continued overleaf…/
For more information on MS visit MS Australia’s website at msaustralia.org.au. For current research on MS
visit MS Research Australia’s website at msra.org.au
Contact for Australian MS Longitudinal Study (AMSLS): Dr Rex D. Simmons, Project Manager
Level 2 East, Building 5, Canberra Hospital, PO Box 11, WODEN ACT 2606
Telephone 02 6244 4228 Facsimile 02 6244 3211 Email rex.simmons@act.gov.au
If you are an Australian Resident in any State or Territory and were diagnosed with MS by a
neurologist after 30th June 2002, you are automatically eligible to enrol in the AMSLS and assist
with national research projects relevant to people with MS. Please note it doesn’t matter if your
MS is mild, or not causing you any problems or discernable “disability” — you can still make a
very useful contribution to MS research. The AMSLS especially needs input from people who are
coping well with their MS, along with data from those not so fortunate. So even if your MS is
very mild, by enrolling in the AMSLS you’ll not only be helping others, you’ll be increasing your
own information base should you need it in the future. That’s a sort of “knowledge insurance”!
Protection of privacy is at all times guaranteed for you, your family and/or your carer(s), and for
your health care providers. No names or home addresses of AMSLS participants are placed on any
computers that are connected to the Internet, and therefore such information cannot be “hacked.”
Rather, only secret Study ID Numbers, given to all participants by letter on enrolment, are used to
identify and analyse the research data in the AMSLS database. For completion of online surveys,
participants will need to register with a secure research website, on which everything is encrypted,
giving their Study ID Number, and an email address (for new AMSLS survey alerts). Instructions
will be provided on how to do this and how to complete specific surveys. For participants who are
not able or comfortable with completing their survey forms online, paper survey forms and replypaid envelopes will periodically be mailed in plain envelopes, with full instructions for completion.
No personal information will ever be released from the AMSLS without the participant’s
expressed permission and only anonymously grouped data and results will be published, placed on
a website, or otherwise made public.
If you would like to assist with the Australian MS Longitudinal Study (AMSLS), please read and
complete the attached Consent Form and return it to us in the reply paid envelope. You will then
be sent a “Demographic and Clinical Information Form” to obtain your basic details for enrolment.
The first part of the form (demographic) is to be completed by you, or someone acting on your
behalf; the second (clinical part) is to be completed by your neurologist or treating physician at
your next scheduled or routine appointment, at no extra cost to you. Please note that participation
in the Australian MS Longitudinal Study is at all times voluntary, and you can elect to cease your
participation at any time, without giving a reason.
The Australian MS Longitudinal Study is an ongoing project designed to answer important
questions about the many long-term effects of MS that hitherto have not been thoroughly
addressed (see previous page). Study results are published in peer-reviewed health journals,
summarised in AMSLS newsletters to participants, and discussed periodically at MS Society
meetings and seminars. Further Information about the Australian MS Longitudinal Study can be
obtained from MS Research Australia’s website at msra.org.au. For specific inquiries please
contact:
Dr Rex D. Simmons
Project Manager
Australian MS Longitudinal Study
Level 2 East Building 5
Canberra Hospital
PO Box 11
WODEN ACT 2606
Phone: 02 6244 4228
Email: Rex.Simmons@act.gov.au