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A profile of multiple sclerosis: The New York State Multiple Sclerosis Consortium
L D Jacobs
Department of Neurology, The Buffalo General Hospital, Buffalo, NY 14203, USA
K E Wende
Department of Neurology, The Buffalo General Hospital, Buffalo, NY 14203, USA
C M Brownscheidle
Department of Neurology, The Buffalo General Hospital, Buffalo, NY 14203, USA
B Apatoff
Department of Neurology and Neuroscience, Cornell Medical Center, New York, NY 10021, USA
P K Coyle
Department of Neurology, SUNY at Stony Brook University Hospital, Stony Brook, NY 11794, USA
A Goodman
Department of Neurology, University of Rochester Medical Center, Rochester, NY 14642, USA
M H Gottesman
Division of Neurology, Winthrop University Hospital, Mineola, NY 11501, USA
C V Granger
Center for Functional Assessment Research, Rehabilitation Medicine Department, SUNY at Buffalo, Buffalo, NY 14214, USA
S J Greenberg
Baird MS and Neuroimmunology Tissue Repository, Roswell Park Cancer Institute, Buffalo, NY 14263, USA
J Herbert
The Hospital for Joint Diseases Orthopaedic Institute, MS Care Center, New York, NY 10003, USA
L Krupp
Department of Neurology, SUNY at Stony Brook University Hospital, Stony Brook, NY 11794, USA
N S Lava
Department of Neurology, Albany Medical College, Albany, NY 12208, USA
C Mihai
Department of Neurology, SUNY Health Science Center, Syracuse, NY 13210, USA
A E Miller
Division of Neurology, Maimonides Medical Center, Brooklyn, NY 11219, USA
A Perel
MS Center, Staten Island University Hospital, Staten Island, NY 10306, USA
C R Smith
MS Center, St. Agnes Hospital, White Plains, NY 10605, USA
D H Snyder
New York Hospital Medical Center of Queens, Flushing, NY 11355, USA
The New York State Multiple Sclerosis Consortium
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.
Key Words: multiple sclerosis • demyelinating disease • neurodegenerative disease
Multiple Sclerosis, Vol. 5, No. 5,
369-376 (1999)
DOI: 10.1177/135245859900500511
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