Senior Director, Patient Management, Care and Rehabilitation Research, National MS Society

Kathy Zackowski, PhD, OTR

“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.”

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.

 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. 

Published online March 15, 2021. doi: 10.1177/1352458521999970

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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. 

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

“The weight of evidence is focused on symptom management and comes overwhelmingly from studies that are predominantly or even solely involving people with relapsing-remitting MS. So, this paper evolved because we understood that there's a lack of studies among people with progressive MS. And that creates a big challenge for clinicians and researchers in the field to evaluate symptomatic treatment of progressive MS.”

The International Progressive MS Alliance, consisting of multiple sclerosis (MS) agencies across the world, has called for action in the field of progressive MS in a recent publication. The alliance has called on the research community expand on progressive MS research as well as organizations to devote more funding to its care.

The National MS Society is one such member organization of the alliance, and Kathy Zackowski, PhD, OTR, senior director, patient management, care and rehabilitation research, served as first author. Zackowski and colleagues outlined current issues with progressive MS research in the paper, published in Multiple Sclerosis Journal.

spoke with Zackowski to learn more about the call to action for progressive MS research and the issues that prompted it. She discussed the lack of studies including progressive MS and the imbalance of treatments between relapsing-remitting MS and progressive MS.

 Published online March 15, 2021. doi: 10.1177/1352458521999970

The senior director of patient management, care, and rehabilitation research at the National MS Society discussed the lack of studies on progressive MS compared to RRMS. 

Kathy Zackowski, PhD, OTR

Articles

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

The Need for Progressive MS Research: Kathy Zackowski, PhD, OTR