A profile of multiple sclerosis: The New York State Multiple Sclerosis Consortium

Background: Fatigue is one of the most common and distressing symptoms among persons with multiple sclerosis (pwMS). Objective: The aim of this study is to evaluate fatigue as a predictor for disease worsening among pwMS. Methods: In this retrospective cohort study of New York State MS Consortium (NYSMSC) registry, MS patients reporting moderate-to-severe fatigue at study enrollment ( n = 2714) were frequency matched to less-fatigued subjects ( n = 2714) on age, baseline Kurtzke Expanded Disability Status Scale (EDSS), disease duration, and MS phenotype. Change from baseline patient-reported outcomes (PROs), as measured by LIFEware™, categorized participants into two groups: those with stable/improved outcomes and those who worsened. In a subgroup of patients with longitudinal data ( n = 1951), sustained EDSS worsening was analyzed using Cox proportional hazards modeling to explore the effect of fatigue. Results: The median survival time from study enrollment to sustained EDSS worsening was 8.7 years (CI: 7.2–10.1). Participants who reported fatigue at baseline were more likely to experience sustained EDSS worsening during follow-up (HR: 1.4, 95% CI: 1.2–1.7). Patients who were fatigued at baseline were also more likely to report worsening psychosocial limitations (all ps ⩽ 0.01). Conclusion: In addition to being a common symptom of MS, severe fatigue was a significant predictor for EDSS worsening in the NYSMSC.

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Comparison of injection site reactions and flu-like symptoms between users of peginterferon beta-1a and subcutaneous interferon beta-1a among persons with multiple sclerosis in the New York State Multiple Sclerosis Consortium

10.26226/morressier.59a3e8b7d462b8028d8958c6 ◽

2017 ◽

Author(s):

Bianca Weinstock-Guttman

Keyword(s):

Multiple Sclerosis ◽

New York ◽

Injection Site ◽

Interferon Beta ◽

New York State ◽

York State ◽

Injection Site Reactions

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Multiple sclerosis characteristics in A frican A merican patients in the New York State Multiple Sclerosis C onsortium

Multiple Sclerosis Journal ◽

10.1191/1352458503ms909oa ◽

2003 ◽

Vol 9 (3) ◽

pp. 293-298 ◽

Cited By ~ 67

Author(s):

B Weinstock-Guttman ◽

L D Jacobs ◽

C M Brownscheidle ◽

M Baier ◽

D F Rea ◽

...

Keyword(s):

Multiple Sclerosis ◽

New York ◽

Clinical Characteristics ◽

Disease Duration ◽

New York State ◽

Genetic Studies ◽

York State ◽

Disease Modifying Therapies ◽

Younger Age ◽

Group A

The objective of this study was to determine the clinical characteristics of multiple sclerosis (MS) in A frican A merican (A A) patients in the New York State Multiple Sclerosis C onsortium (NYSMSC) patient registry. The NYSMSC is a group of 18 MS centers throughout New York State organized to prospectively assess clinical characteristics of MS patients. AA s comprise 6% (329) of the total NYSMSC registrants (5602). Demographics, disease course, therapy, and socioeconomic status were compared in A A registrants versus nonA frican A mericans (NA A). There was an increased female preponderance and a significantly younger age at diagnosis in the AA group. A A patients were more likely to have greater disability with increased disease duration. No differences were seen in types of MS and use of disease modifying therapies. O ur findings suggest a racial influence in MS. Further genetic studies that consider race differences are warranted to elucidate mechanisms of disease susceptibility.

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A profile of multiple sclerosis: The New York State Multiple Sclerosis Consortium

Multiple Sclerosis Journal ◽

10.1177/135245859900500511 ◽

1999 ◽

Vol 5 (5) ◽

pp. 369-376 ◽

Cited By ~ 83

Author(s):

L D Jacobs ◽

K E Wende ◽

C M Brownscheidle ◽

B Apatoff ◽

P K Coyle ◽

...

Keyword(s):

Multiple Sclerosis ◽

New York ◽

Physical Disability ◽

Progressive Disease ◽

New York State ◽

Full Time ◽

Current Profile ◽

York State ◽

Data Collection Instrument ◽

Full Time Employment

We have obtained a current profile of multiple sclerosis (MS) in New York State through a centralized patient registry and standardized data collection instrument associated with the New York State Multiple Sclerosis Consortium of 12 MS centers located throughout the state. Data from the first 3019 patients with clinically definite MS revealed a clear relationship between MS disease type, duration of disease, and severity of physical disability. Patients with relapsing disease had disease durations approximately half as long as those with progressive forms of the disease (means approximately 6 years versus 11 years). The majority of patients with relapsing disease had Expanded Disability Status Scale (EDSS) scores of 4.0 or less (self-sustained, fully ambulatory), whereas the majority of patients with progressive disease types had EDSS scores of 6.0 or greater (at least unilateral assist for walking). These findings emphasize the importance of early intervention in patients with relapsing disease to slow or prevent the accumulation of physical disability associated with progressive types of disease. Progressive disease was associated with lack of full-time employment and being disabled before the age of 60 years. Patients with relapsing disease were more likely to be employed and have private forms of insurance, whereas patients with progressive types of disease were more likely to have government-supported insurance to cover medical expenses.

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Trend for decreasing Multiple Sclerosis Severity Scores (MSSS) with increasing calendar year of enrollment into the New York State Multiple Sclerosis Consortium

Multiple Sclerosis Journal ◽

10.1177/1352458510396269 ◽

2011 ◽

Vol 17 (6) ◽

pp. 725-733 ◽

Cited By ~ 14

Author(s):

Ilya Kister ◽

Eric Chamot ◽

Joshua H Bacon ◽

Gary Cutter ◽

Joseph Herbert

Keyword(s):

Multiple Sclerosis ◽

New York ◽

Quantile Regression ◽

Disease Duration ◽

New York State ◽

Multivariable Analysis ◽

Diagnostic Delay ◽

York State ◽

Severity Scores ◽

History Of

Background: Although the natural history of multiple sclerosis has been charted extensively, it is still not known whether the trajectory of disability accumulation has changed in the era of disease-modifying therapies (DMTs). Objective: The objective of this study was to examine trends in Multiple Sclerosis Severity Score (MSSS) with regard to calendar year of enrollment into the New York State MS Consortium (NYSMSC). Methods: Distributions of MSSS were calculated for each year of enrollment, from 1996 to 2007. Quantile regression was used in a multivariable analysis to model for conditional distribution of MSSS quantiles as functions of potential confounders. Results: The cohort consisted of 6238 patients. Mean age at enrollment was 38 years (SD = 10) and mean disease duration was 10.1 years (SD = 7.3); 57% were on DMTs. The quantile regression model of trends in MSSS between 1996 and 2007 controlled for age, sex, ethnicity, diagnostic delay, and disease duration and demonstrated a robust trend toward lower MSSS with increasing year of enrollment. The model-predicted median MSSS at enrollment in 1996 was 5.04 (95% CI, 4.86–5.21), and in 2007 was 3.78 (95%CI, 3.36–4.20; p < 0.001). The downward trend in MSSS during the enrollment period was confirmed by analysis of Expanded Disability Status Scale (EDSS) distributions, adjusted for disease duration, in successive years of enrollment. Conclusions: The recent enrollees into the NYSMSC had lower MSSSs compared to the earlier enrollees. The apparent slowing in disability accumulation is likely due to a complex combination of factors: advent of DMTs and improvements in MS care, as well as selection, migration, and recall biases.

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