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

Abstract

We have obtained a current profile of multiple sclerosis 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.

VHA Multiple Sclerosis Surveillance Registry and its similarities to other contemporary multiple sclerosis cohorts

“…This report provides a description of the methods used to create the VHA MSSR and provides comparisons of the demographic and clinical composition with several other large U.S. MS cohorts [13][14][15]. This is the first study to provide a detailed description of the contemporary VHA MS population and compare the epidemiologic characteristics across several large MS cohorts from the United States.…”

“…The New York MS Consortium (NYMSC) [13], the Sonya Slifka Longitudinal MS Study (SLIFKA) [14], and the North American Research Consortium on MS (NAR-COMS) Spring 2012 survey provided comparisons for the MSSR. The NYMSC, SLIFKA, and NARCOMS are the largest published MS cohorts in the United States and have been reasonably well characterized in the literature.…”

“…Age at symptom [14]. § New York MS Consortium (NYMSC) [13]. ¶ Employment status dichotomized as "in labor force" or "not in labor force. " ** Employment data extrapolated from Figure 6, Jacobs et al [13]. † † Income categories differed in SLIFKA: <10,000; 10,000-25,000; 25,000-50,000; and 50,000. § § Insurance was reported as disability income from either Social Security or private sources. ¶ ¶ Insurance data extrapolated from Figure 7, Jacobs et al [13]. CHAMPUS = Civilian Health and Medical Program of the Uniformed Services, FT = full time, GED = General Educational Development, MSSR = MS Surveillance Registry, PT = part-time, SD = standard deviation. 177 (13) 185 (13) 507 (7) 243 (12) 283 (9) [14].…”

“…177 (13) 185 (13) 507 (7) 243 (12) 283 (9) [14]. § New York MS Consortium (NYMSC) [13]. ¶ Symptoms assessed with MS Symptom Checklist and [21].…”

“…First, create the VHA MS Surveillance Registry (MSSR) and provide a detailed description of the epidemiologic and clinical composition of the modern VHA MS population. Second, provide an updated description of the epidemiologic and clinical characteristics of MS in the United States by contrasting the characteristics of the MSSR with other published MS cohorts [13][14][15].…”