Progressive MS in the Research Spotlight

Progressive forms of MS  were at the forefront of  discussions at the recent combined ECTRIMS/ACTRIMS Congress – the European and American Committee for Treatment in Multiple Sclerosis. Primary Progressive MS (PPMS) and Secondary Progressive MS (SPMS) account for a small percentage of cases of MS and they are usually accompanied by worsening disability.

Thankfully, the needs of these  members of our community are being recognized through the formation of the Progressive MS Alliance, a group  formed by  MS societies from several countries, including the United States and Canada.  These  MS Societies, including our own NMSS  in the US, announced at  the ECTRIMS/ACTRIMS meeting the first group of 22 research projects that are now funded. The MS Alliance received 195 applications in response to their call for proposals to study progressive MS, which demonstrates a growing interest in further understanding  and helping people living with these forms of MS.

The Progressive MS Alliance will invest $30 million US dollars in the next five years to support even more Progressive MS Studies.  The currently funded projects fall into the early stages of research, often called pilot studies, and they focus in the areas of identifying new therapies and ways to use existing therapies that might work on progressive MS disease.  They also funded studies that will look at what causes progression. Databanks of information from progressive MS volunteers will  include biosamples and personal histories.  The hope is these pilot studies will provide critical information to fill in gaps of knowledge and build the foundation for future progressive MS work.

According to the MS Alliance network, the areas of study and the research groups that were funded are:1

Clinical trials and outcome measures: Hasselt University (Belgium), Imperial College London (UK), John Hopkins University (USA), Mount Sinai School of Medicine (USA), Umeå University (Sweden)

 Biomarkers of progression: VU University Medical Center Amsterdam (Netherlands), Vall d’Hebron Research Institute (Spain)

Gene studies: Karolinska Institute (Sweden), University of California-San Francisco (USA), The International Multiple Sclerosis Genetics Consortium (UK)

Rehabilitation trials: Kessler Foundation Research Center (USA), Plymouth University (UK)

Underlying pathology of progression: Brigham and Women’s Hospital (USA), VU University Medical Center Amsterdam (Netherlands), McGill University (Canada), Monash University (Australia), University of Edinburgh (UK), University of Verona (Italy), Yale University (USA)

Developing new disease models: Renovo Neural, Inc. (USA), Stanford University (USA)

People with progressive forms of MS, often the most debilitating type of MS, often voice frustration that their needs are overlooked in favor of people with Relapsing  Remitting MS (RRMS). PPMS is a small percentage of the types  of MS, and often the concern has been voiced that perhaps there wasn’t enough incentive to look at their form of this disaease.  The number of people diagnosed with RRMS is about 85% at their initial diagnosis, and the remaining 15% of people with MS have one of the progressive forms.2

As I understand it, one of the greatest obstacles  in studying progressive MS is it takes substantially more time than RRMS to see the course of the disease. Many trials for RRMS can be done in 6-12 months, whereas progressive MS studies may take much longer. I had the opportunity to ask that question via twitter to one of the MS researchers at the ECTRIMS/ACTRIMS conference and his reply was that it will take at least three years to validate any drug trial with progressive MS.

Hopefully these pilot studies are just the beginning of the Progressive MS research and will yield results that can be used immediately to benefit everyone.  It is encouraging to read about the Progressive MS Alliance and see this new trend of cooperation and funding among the MS Societies and researchers.

Wishing you well,


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