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Survey Results Suggest Most Agree We Need a Better Way to Describe Different Stages of MS

September 13, 2023

Last year, an opinion paper proposed a new approach under development to reconsider how different types or stages of MS are described. The goal is to move away from clinical descriptions like relapsing-remitting, primary progressive, or secondary progressive MS. Instead, future descriptions would be driven by a biological understanding of what drives any individual’s disease stage, leading to more personalized treatments that can stop MS in its tracks.

Key to this process is input from stakeholders. Now results from a global survey have been published. The survey was sent to a broad range of people including the professional research and clinical community and people living with MS. Among 502 responses from people in 49 countries, 77% supported changing the description of MS.

Respondents placed high importance on the future framework’s ability to help with making treatment decisions, guide research and clinical trials, and ease communication to people living with MS about their disease. 

Learn more about how this proposed new framework may affect you in the future, in a RealTalk MS podcast.

Do the current MS clinical course descriptors need to change and if so how? A survey of the MS community” by Alan J Thompson, Marcello Moccia, Maria Pia Amato, Peter A Calabresi, Marcia Finlayson, Annie Hawton, Fred D Lublin, Ruth Ann Marrie, Xavier Montalban9, Michael Panzara, Maria Pia Sormani, Jon Strum, Barbara G Vickrey, and Timothy Coetzee, is published in the MS Journal (Published online September 11, 2023).

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system. Symptoms range from numbness and tingling to blindness and paralysis, and there is currently no cure for MS. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. An estimated 1 million people live with MS in the United States. Most people with MS are diagnosed between the ages of 20 and 50, and it affects women three times more than men.


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