Priorities for research – listening to the MS community

07 December, 2016

Earlier this year we asked the Australian MS community, to let us know your thoughts on the priorities for the many different areas of MS research. The results are in, and we are enormously grateful to everyone who took the time to share their views.

We are pleased that 1,058 people participated in the survey. This included 774 people with MS, 219 people with a close connection to MS (friends and family) and 65 MS health and scientific professionals. Reassuringly, an independent analysis revealed that we had captured a representative sample of the Australian MS population.

Perhaps unsurprisingly, the top priority goals for MS research emerged as:

  • Finding a cure for MS (via repair and regeneration of cells)
  • Better treating MS (relapses and disease progression)
  • Prevent MS

These top three goals were unanimous no matter what stage of the MS journey people are at and also across all groups within the MS community. Research to improve the management and care of MS (symptoms, services and support), and to improve the ability to predict and better diagnose MS, were lower priorities.

Within ‘better treating MS’ the community prioritised research relating to progressive MS, followed by better treatments to stop relapses. There was also interest in developing a better understanding of the safety and effectiveness of autologous haematopoietic stem cell transplant for MS.

One important and emerging theme was the priority people placed on lifestyle factors in managing the impact of MS, potentially reflecting people’s desire to understand factors they may be able to control themselves, such as stress, lifestyle, diet and exercise. Overall, social and applied research to improve the management and care of MS symptoms and rehabilitation was rated as a lower priority across the whole MS community. However, the people who are more severely impacted by their MS gave it a higher rating than others.

MS has many symptoms and it was imperative that MS Research Australia evaluated which symptoms the community regarded as needing the most urgent attention. The top responses were symptoms relating to walking and mobility, cognition, pain, fatigue, vision, speech and swallowing. There were some differences in the priorities identified by health professionals and friends and family. This needs closer examination as it may have implications for the provision of information, referrals and services in relation to the management of symptoms.

It is important to MS Research Australia that we work with the MS community to continue to fund the strongest Australian research that aligns with the community’s needs and wants. A review of our funding over the past few years reveals that we are well aligned with the community, but there are some areas where our research strategy can be adjusted. This includes accelerating Australia’s excellent research in myelin and nerve repair into clinical trials of new treatments, as well as translating the lifestyle factors identified in our strong epidemiological research into interventions to prevent MS and reduce its impact. Additional focus should perhaps be given to fatigue, cognition and pain management in MS.

We will delve deeper into these issues and all the findings from our survey in the coming months, and keep you informed of our progress to address these priorities.

View the report here

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