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VHA Multiple Sclerosis Surveillance Registry and its similarities to other contemporary multiple sclerosis cohorts.
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VHA Multiple Sclerosis Surveillance Registry and its similarities to other contemporary multiple sclerosis cohorts William J. Culpepper, PhD, MA; Mitchell T. Wallin, MD; Laurence S. Magder, PhD, MPH; Eli Perencevich, MD, MS; Walter Royal, MD; Douglas D. Bradham, DrPH, MA, MPH; Gary Cutter, PhD; Christopher T. Bever, MD
Aim • Create VHA MS Surveillance Registry (MSSR) and provide detailed description of epidemiologic and clinical composition of modern VHA MS population. • Provide an updated description of epidemiologic and clinical characteristics of MS in U.S. by contrasting MSSR with other published MS cohorts. • Relevance • Large, longitudinal, and diverse cohort is needed to understand risk factors for development/progression of MS.
Methods • Cross-sectional, mail-based survey of stratified, random sample of 3,905 VHA users with MS. • Detailed demographic and clinical data as well as patient-reported outcomes assessing disability/QoL were collected —1,379 Veterans were enrolled into MSSR. • MS Comparison Cohorts • New York MS Consortium (NYMSC) • Sonya Slifka Longitudinal Multiple Sclerosis Study (SLIFKA) • North American Research Consortium on MS (NARCOMS)
Results • Respondents did not differ from non-respondents with regard to demographics or region. • Age of MS onset and diagnosis, subtype distribution, and the most prevalent MS symptoms were very similar across cohorts. • MSSR appears to be representative of general MS population.
Conclusion • Investigators should review data collection methods and sampling strategies of each cohort carefully with respect to their research question(s) when deciding which cohort(s) to use. • While some demographic differences were observed between cohorts, clinical composition of the MSSR was very similar to other MS cohorts. • MSSR is generally representative of larger U.S. MS population. • Detailed healthcare utilization and cost data maintained by VHA combined with data from MSSR provides a unique and demographically diverse MS cohort for future study.