Crucial Symptoms of Progressive MS: Kathy Zackowski, PhD, OTR


The senior director of patient management, care, and rehabilitation research at the National MS Society discussed symptoms of progressive MS that need more attention and research.

“The authors examined the research portfolios of the MS Progressive Alliance, as well as its 5 managing members. That includes the MS societies in Australia and Canada, Italy, the United Kingdom, and the United States, and they found that in 2017, the organizations funded $228 million in research grants. But interestingly, only 1% were spent on studies that had anything to do with pain, 3% related to issues about mobility or upper extremity function, and 5% were devoted to cognitive defect dysfunction.”

A recent publication published in Multiple Sclerosis Journal by the International Progressive MS Alliance, consisting of multiple sclerosis (MS) agencies across the world, has called for action in the field of progressive MS to prioritize certain areas of research. The paper identified issues that need more attention in progressive MS, including symptom management strategies and the need for funding.

Kathy Zackowski, PhD, OTR, senior director, patient management, care and rehabilitation research, National MS Society, served as first author of the paper. Zackowski and colleagues outlined current issues with progressive MS research and funding in the paper, pointing to a number of factors that have influenced the lag in developing symptomatic and rehabilitation approaches to the disease.

NeurologyLive spoke with Zackowski to learn more about the facets of progressive MS that need more research. She went on to list the 4 facets of MS management that were outlined in the paper: fatigue, pain, mobility and upper extremity impairment, and cognitive impairment. She additionally detailed the need for further funding to address symptom management and overcome challenges in research.

Zackowski KM, Freeman J, Brichetto G, et al. Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance. Mult Scler J. Published online March 15, 2021. doi: 10.1177/1352458521999970
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