The Australian MS Longitudinal Study (AMSLS) research platform is available for researchers, MS societies or other stakeholders who can benefit from this resource. The AMSLS study can provide de-identified data, collect new data, and assist with the recruitment for studies.

Scroll down for more information on data and survey requests and current AMSLS collaborative projects.

Data Request

Data Requests

There are two main types of data:

  • Summary data: Simple tables and figures can be provided on a small number of data fields. This request might be suitable for those who have limited analysis skills, and/or require small amounts of information.
  • Raw data: When more data is required, a de-identified dataset can be provided.

An overview of the AMSLS dataset is provided below.

  • The AMSLS Data Request Form should be completed.
  • The request is reviewed and approved by the AMSLS Steering Committee.
  • Preliminary inquiries for feasibility or funding purposes can be done in advance.
  • For projects that results in publications, an official collaboration will be established, feedback will be provided on research plans and AMSLS members will become co-authors on publications.
  • The data can only be used for the stated purposes.
Data Collection

Data Collection

The AMSLS can include a number of questions to AMSLS surveys, or can run standalone surveys for you.

  • The AMSLS Request for Survey Questions Form should be completed
  • The request is reviewed and approved by the AMSLS Steering Committee.
  • For larger projects, an official collaboration will be established, feedback will be provided on the survey questions and research plan, and AMSLS members will become co-authors on publications.
  • An overview of the already collected AMSLS data is provided below.

Current projects and collaborations

Monash University, Department of Management – The AMSLS study has a focus on employment issues. This work is done in collaboration with Associate Professor Pieter van Dijk and Associate Professor Andrea Kirk Brown from Monash University. Maintaining employment for people with MS is made difficult due to the impact of disease related symptoms on their ability to perform their job. Symptoms alone, however, do not explain the high rates of turnover for employees with MS. We track employment rate in people with MS compared to the Australian population. In addition, we examine the extent to which employees with MS perceive they feel trusted and respected in the workplace, and safe to participate fully at work, and the consequent impact of these perceptions on their decision to (a) voluntarily disclose their diagnosis, and (b) their intentions to remain in employment.

Primary progressive MS study
  • The Menzies MS Research Group has been funded (MS Research Australia, $140,000, 2015-2016) to collect data specifically from people with PPMS, to examine which factors are associated with the onset of Primary Progressive MS (PPMS), and which factors might influence the progression over several years. This is important because there are currently no treatments available for people with PPMS. Little specific research has been done in PPMS and our understanding of the risk factors for this MS variant is poor. Understanding the causes of PPMS and what affects its progress over time can ultimately lead to treatments and prevention.
  • Go to website for more information
DEVA study
  • The Menzies MS Research Group has been funded (MS Research Australia, $160,000, 2015-2016) to develop a validated Relapsing-Remitting MS disease model that simulates the progression of MS. The aim is to build a gold standard, validated, transparent decision analysis tool to identify cost-effective interventions amongst the existing and future interventions (including medications). Large components of the AMSLS data feed into this project, including the 2016 Health Economic Impact Survey.
  • Go to website for more information
COMPANZ

The Menzies MS Research Group has been funded (MS Research Australia, $180,000, 2016-2017) to compare MS patients from Australia and New Zealand. Australian MS patients with Relapsing-Remitting MS have been largely treated while the treatment rules in New Zealand have been far more restrictive. This study will answer the question whether the use of very costly disease-modifying therapies in MS has had a significant positive impact on the long-term clinical course.

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