National Multiple Sclerosis Society Pilot Grants

2020 ◽  
Vol 35 (4) ◽  
pp. 14-15
Keyword(s):  
Multiple Sclerosis ◽  
National Multiple Sclerosis Society

Revisiting The Multiple Sclerosis Functional Composite: proceedings from the National Multiple Sclerosis Society (NMSS) Task Force on Clinical Disability Measures

2012 ◽  
Vol 18 (8) ◽  
pp. 1074-1080 ◽  
Author(s):  
D Ontaneda ◽  
N LaRocca ◽  
T Coetzee ◽  
RA Rudick
Keyword(s):  
Multiple Sclerosis ◽  
Outcome Measure ◽  
Task Force ◽  
Critical Path ◽  
Washington Dc ◽  
Functional Composite ◽  
Multiple Sclerosis Functional Composite ◽  
Score Method ◽  
National Multiple Sclerosis Society ◽  
Disability Outcome

This article describes proceedings from a meeting of the National Multiple Sclerosis Society (NMSS) Task Force on Clinical Disability Measures (the TF). The TF was appointed by the NMSS Research Programs Advisory Committee with the goal of pooling and analyzing existing datasets to explore the utility of novel disability outcome measures based on the Multiple Sclerosis Functional Composite (MSFC) approach. The TF seeks to determine the suitability of the MSFC approach as a primary clinical outcome measure for registration trials in MS. The TF met in Washington, DC, Dec. 14 and 15, 2011, and provided unanimous support for a collaborative approach involving representatives from academic medicine, the pharmaceutical industry, regulatory agencies, the NMSS and the Critical Path Institute. There was also unanimous agreement that analysis of existing datasets would be useful in making progress toward the objective. The TF placed high value on determining the clinical meaning of individual component measures for the MSFC, and in establishing optimal analysis methods for MSFC so that scores would be more interpretable than the originally recommended z-score method. The background for a collaborative project aimed at developing an improved disability outcome measure is described in this paper.

Personal, health and function, and career maintenance factors as determinants of quality of life among employed people with multiple sclerosis

Work ◽  
2020 ◽  
Vol 67 (1) ◽  
pp. 81-94 ◽  
Author(s):  
Phillip Rumrill ◽  
Jian Li ◽  
David Strauser ◽  
Richard T. Roessler ◽  
Malachy Bishop ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Multiple Regression Model ◽  
Future Research ◽  
Personal Health ◽  
Washington Dc ◽  
Perceived Quality Of Life ◽  
National Multiple Sclerosis Society ◽  
And Function

BACKGROUND: Multiple sclerosis (MS) is an intrusive disease that significantly affects labor force participation. OBJECTIVE: This study examined the extent to which factors at the personal, health and function, and environmental/career maintenance levels contribute to the predictability power for quality of life among employed people with MS. METHOD: Participants consisted of 523 members of nine National Multiple Sclerosis Society chapters representing 21 states and Washington, DC. These individuals were employed at the time of the survey, and they were primarily middle age (average age of 48 years) and Caucasian (74%). RESULTS: The final hierarchical multiple regression model explained 54 percent of the variability in participants’ quality of life scores, although none of the hypothesized personal/demographic predictors were significant. Participants who perceived better overall health and lower levels of stress, who experienced less severe cognitive and mobility-related MS symptoms, and who expressed stronger job-person matches and higher levels of job satisfaction reported higher quality of life scores than did other participants. CONCLUSIONS: The findings underscore the complexity involved in predicting perceived quality of life among employed people with MS. Implications of these findings for future research and clinical practice are discussed.

Use and Self-Reported Benefit of Complementary and Alternative Medicine Among Multiple Sclerosis Patients

2006 ◽  
Vol 8 (1) ◽  
pp. 5-10 ◽  
Author(s):  
Vijayshree Yadav ◽  
Lynne Shinto ◽  
Cynthia Morris ◽  
Angela Senders ◽  
Sara Baldauf-Wagner ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Alternative Medicine ◽  
Complementary And Alternative Medicine ◽  
Low Fat ◽  
Perceived Benefit ◽  
National Multiple Sclerosis Society ◽  
The Common ◽  
Multiple Sclerosis Patients ◽  
Fat Diets ◽  
Complementary And Alternative

We conducted a survey to study the prevalence and types of complementary and alternative medicine (CAM) therapies used by multiple sclerosis (MS) patients in Oregon and southern Washington. We mailed questionnaires to 5316 people using the mailing list of the Oregon Chapter of the National Multiple Sclerosis Society (NMSS). The survey enquired about demographic and clinical characteristics, use of various CAM and conventional therapies for MS by the respondents, and the respondents' self-perceived benefit ratings for the various therapies. We received 2026 responses (38%). Eighty-four percent of the respondents reported using one or more CAM therapies at some time after diagnosis of MS (CAM users), the most common being diet (59%), nutritional supplements (46%), herbal treatments (36%), and mind-body therapies (32%). CAM therapies rated as very beneficial included yoga; meditation; Swank, vegetarian and low-fat/low-cholesterol diets; and vitamin B12. Respondents also used conventional exercise (86%) and disease-modifying therapies (77%). Our survey confirms the common use of various CAM therapies by MS patients. CAM therapies such as low-fat diets, essential fatty acid supplements, yoga, and meditation appear to be frequently used and considered very beneficial by a significant number of MS patients and may warrant further exploration.

scholarly journals A survey of risk tolerance to multiple sclerosis therapies

Neurology ◽  
2019 ◽  
Vol 92 (14) ◽  
pp. e1634-e1642 ◽  
Author(s):  
Robert J. Fox ◽  
Carol Cosenza ◽  
Lauren Cripps ◽  
Paul Ford ◽  
MaryBeth Mercer ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Kidney Injury ◽  
Risk Tolerance ◽  
Research Committee ◽  
Risk Scenarios ◽  
The North ◽  
Disease Modifying Therapy ◽  
Multiple Risks ◽  
Wide Range ◽  
National Multiple Sclerosis Society

ObjectiveTo determine tolerance to various risk scenarios associated with current multiple sclerosis (MS) therapies.MethodsPeople with MS from the North American Research Committee on Multiple Sclerosis Registry's online cohort and the National Multiple Sclerosis Society were invited to complete a questionnaire on tolerance to real-world risks associated with a hypothetical therapy. Multiple risks levels were presented, including skin rash, infection, kidney injury, thyroid injury, liver injury, and progressive multifocal leukoencephalopathy (PML).ResultsBoth PML and kidney injury had the lowest risk tolerance (RT) at 1:1,000,000, and thyroid and infection risks had the highest tolerance at 1:1,000. Men, younger individuals, and participants with greater disability reported a higher tolerance to all risk scenarios. Those who were currently taking an MS therapy reported higher tolerance than those not taking any therapy. Participants taking infusion therapies reported high tolerance to all risks, and those taking injectables reported a lower tolerance.ConclusionPeople with MS displayed a wide range of RT for MS therapies. Our study identified sex, age, disability, and current disease-modifying therapy use to be associated with RT.

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