Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance

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; Beek J van; Anthony Feinstein

doi:10.1177/1352458521999970

Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance

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, Beek J vanAnthony Feinstein

^*Corresponding author for this work

School of Health Professions

Research output: Contribution to journal › Article › peer-review

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Abstract

Background: People with multiple sclerosis (MS) experience myriad symptoms that negatively affect their quality of life. Despite significant progress in rehabilitation strategies for people living with relapsing-remitting MS (RRMS), the development of similar strategies for people with progressive MS has received little attention. Objective: To highlight key symptoms of importance to people with progressive MS and stimulate the design and implementation of high-quality studies focused on symptom management and rehabilitation. Methods: A group of international research experts, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to devise research priorities for addressing symptoms in progressive MS. Results: Based on information from the MS community, we outline a rationale for highlighting four symptoms of particular interest: fatigue, mobility and upper extremity impairment, pain, and cognitive impairment. Factors such as depression, resilience, comorbidities, and psychosocial support are described, as they affect treatment efficacy. Conclusions: This coordinated call to action—to the research community to prioritize investigation of effective symptom management strategies, and to funders to support them—is an important step in addressing gaps in rehabilitation research for people affected by progressive MS.

Original language	English
Pages (from-to)	135245852199997-135245852199997
Number of pages	0
Journal	Multiple Sclerosis Journal
Volume	0
Issue number	0
Early online date	15 Mar 2021
DOIs	https://doi.org/10.1177/1352458521999970
Publication status	Published - 15 Mar 2021

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10.1177/1352458521999970

Zackowski 2021

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Zackowski, K. M., Freeman, J., Brichetto, G., Centonze, D., Dalgas, U., DeLuca, J., Ehde, D., Elgott, S., Fanning, V., Feys, P., Finlayson, M., Gold, S. M., Inglese, M., Marrie, R. A., Ploughman, M., Sang, C. N., Sastre-Garriga, J., Sincock, C., Strum, J., ... Feinstein, A. (2021). Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance. Multiple Sclerosis Journal, 0(0), 135245852199997-135245852199997. https://doi.org/10.1177/1352458521999970

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title = "Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance",

abstract = "Background: People with multiple sclerosis (MS) experience myriad symptoms that negatively affect their quality of life. Despite significant progress in rehabilitation strategies for people living with relapsing-remitting MS (RRMS), the development of similar strategies for people with progressive MS has received little attention. Objective: To highlight key symptoms of importance to people with progressive MS and stimulate the design and implementation of high-quality studies focused on symptom management and rehabilitation. Methods: A group of international research experts, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to devise research priorities for addressing symptoms in progressive MS. Results: Based on information from the MS community, we outline a rationale for highlighting four symptoms of particular interest: fatigue, mobility and upper extremity impairment, pain, and cognitive impairment. Factors such as depression, resilience, comorbidities, and psychosocial support are described, as they affect treatment efficacy. Conclusions: This coordinated call to action—to the research community to prioritize investigation of effective symptom management strategies, and to funders to support them—is an important step in addressing gaps in rehabilitation research for people affected by progressive MS. ",

author = "Zackowski, {Kathleen M.} and Jennifer Freeman and Giampaolo Brichetto and Diego Centonze and Ulrik Dalgas and John DeLuca and Dawn Ehde and Sara Elgott and Vanessa Fanning and Peter Feys and Marcia Finlayson and Gold, {Stefan M.} and Matilde Inglese and Marrie, {Ruth Ann} and Michelle Ploughman and Sang, {Christine N.} and Jaume Sastre-Garriga and Caroline Sincock and Jonathan Strum and van, {Beek J} and Anthony Feinstein",

year = "2021",

month = mar,

day = "15",

doi = "10.1177/1352458521999970",

language = "English",

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journal = "Multiple Sclerosis Journal",

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Zackowski, KM, Freeman, J, Brichetto, G, Centonze, D, Dalgas, U, DeLuca, J, Ehde, D, Elgott, S, Fanning, V, Feys, P, Finlayson, M, Gold, SM, Inglese, M, Marrie, RA, Ploughman, M, Sang, CN, Sastre-Garriga, J, Sincock, C, Strum, J, van, BJ & Feinstein, A 2021, 'Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance', Multiple Sclerosis Journal, vol. 0, no. 0, pp. 135245852199997-135245852199997. https://doi.org/10.1177/1352458521999970

TY - JOUR

T1 - Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance

AU - Zackowski, Kathleen M.

AU - Freeman, Jennifer

AU - Brichetto, Giampaolo

AU - Centonze, Diego

AU - Dalgas, Ulrik

AU - DeLuca, John

AU - Ehde, Dawn

AU - Elgott, Sara

AU - Fanning, Vanessa

AU - Feys, Peter

AU - Finlayson, Marcia

AU - Gold, Stefan M.

AU - Inglese, Matilde

AU - Marrie, Ruth Ann

AU - Ploughman, Michelle

AU - Sang, Christine N.

AU - Sastre-Garriga, Jaume

AU - Sincock, Caroline

AU - Strum, Jonathan

AU - van, Beek J

AU - Feinstein, Anthony

PY - 2021/3/15

Y1 - 2021/3/15

N2 - Background: People with multiple sclerosis (MS) experience myriad symptoms that negatively affect their quality of life. Despite significant progress in rehabilitation strategies for people living with relapsing-remitting MS (RRMS), the development of similar strategies for people with progressive MS has received little attention. Objective: To highlight key symptoms of importance to people with progressive MS and stimulate the design and implementation of high-quality studies focused on symptom management and rehabilitation. Methods: A group of international research experts, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to devise research priorities for addressing symptoms in progressive MS. Results: Based on information from the MS community, we outline a rationale for highlighting four symptoms of particular interest: fatigue, mobility and upper extremity impairment, pain, and cognitive impairment. Factors such as depression, resilience, comorbidities, and psychosocial support are described, as they affect treatment efficacy. Conclusions: This coordinated call to action—to the research community to prioritize investigation of effective symptom management strategies, and to funders to support them—is an important step in addressing gaps in rehabilitation research for people affected by progressive MS.

AB - Background: People with multiple sclerosis (MS) experience myriad symptoms that negatively affect their quality of life. Despite significant progress in rehabilitation strategies for people living with relapsing-remitting MS (RRMS), the development of similar strategies for people with progressive MS has received little attention. Objective: To highlight key symptoms of importance to people with progressive MS and stimulate the design and implementation of high-quality studies focused on symptom management and rehabilitation. Methods: A group of international research experts, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to devise research priorities for addressing symptoms in progressive MS. Results: Based on information from the MS community, we outline a rationale for highlighting four symptoms of particular interest: fatigue, mobility and upper extremity impairment, pain, and cognitive impairment. Factors such as depression, resilience, comorbidities, and psychosocial support are described, as they affect treatment efficacy. Conclusions: This coordinated call to action—to the research community to prioritize investigation of effective symptom management strategies, and to funders to support them—is an important step in addressing gaps in rehabilitation research for people affected by progressive MS.

U2 - 10.1177/1352458521999970

DO - 10.1177/1352458521999970

M3 - Article

SN - 1352-4585

VL - 0

SP - 135245852199997-135245852199997

JO - Multiple Sclerosis Journal

JF - Multiple Sclerosis Journal

IS - 0

ER -

Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance

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