For many of the worst symptoms that may be experienced by individuals living with progressive forms of multiple sclerosis, there are insufficient treatment approaches that can relieve them and improve quality of life. To jump start research to address these gaps, the International Progressive MS Alliance convened an expert panel of researchers, representatives from industry, and people affected by progressive MS to highlight and focus research priorities to address key symptoms: fatigue, impairment of mobility and upper limb function, pain, and cognitive impairment.
The expert panel has published a paper outlining their recommendations as a first step toward driving research to develop much-needed solutions for these symptoms.
- The authors found that minimal research funding is currently directed toward these symptoms, and call out the need for increased research investments to identify solutions.
- Key knowledge gaps and priority research questions were outlined for the four symptoms, including the need for better ways to measure symptom severity, how to best treat them, and how to sustain the benefits of treatments to provide relief and improve function for people living with progressive MS.
The International Progressive MS Alliance is a global effort to accelerate the development of effective treatments for people with progressive forms of MS to improve quality of life worldwide. Ensuring people with progressive MS can live fulfilling lives requires effectively addressing the multitude of symptoms that disrupt daily life. The Alliance is working to establish a global research strategy that can lead to proven methods for rehabilitation and symptom management to improve the lives of people living with progressive MS.
In May 2018, the Alliance convened a Scientific Congress that focused on symptom management and rehabilitation in progressive MS, and included scientists, industry members, and people affected by MS. An expert panel was established to identify knowledge gaps in four symptoms that people with progressive MS have said are important to them: fatigue, impairment of mobility and upper limb function, pain, and cognitive impairment.
For more information, refer to publication in The MS Journal:
“Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance” by Kathleen M. Zackowski, Jennifer Freeman, Giampaolo Brichetto, Diego Centonze, Ulrik Dalgas, John DeLuca, Dawn Ehde, Sara Elgott, Vanessa Fanning, Peter Feys, Marcia Finlayson, Stefan M. Gold, Matilde Inglese, Ruth Ann Marrie, Michelle Ploughman, Christine N. Sang, Jaume Sastre-Garriga, Caroline Sincock, Jonathan Strum, Johan van Beek and Anthony Feinstein, was published in The MS Journal (Published online March 15, 2021).
About the International Progressive MS Alliance
The Alliance exists to accelerate the development of effective treatments for people with progressive forms of multiple sclerosis to improve quality of life worldwide. It is an unprecedented global collaboration of MS organisations, researchers, health professionals, the pharmaceutical industry, companies, trusts, foundations, donors and people affected by progressive MS, working together to address the unmet needs of people with progressive MS ─ rallying the global community to find solutions. Our promise is more than hope, it is progress.