@article{c2ef1d73a03d461bae5af95208c5f999,
title = "A contemporary profile of primary progressive multiple sclerosis participants from the NARCOMS Registry",
abstract = "Background: Primary progressive multiple sclerosis (PPMS) represents 10%–15% of all multiple sclerosis (MS) diagnoses. Information regarding socio-demographic and clinical characteristics of persons with PPMS is limited. Objective: To characterize persons with PPMS in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. Methods: We compared demographic and health-related characteristics of NARCOMS Registry participants reporting PPMS in the spring 2015 update survey with those reporting relapsing-remitting multiple sclerosis (RRMS) and secondary progressive multiple sclerosis (SPMS), with characteristics of published PPMS cohorts. Results: Of 8004 responders, 6774 self-reported a clinical course of PPMS, SPMS, or RRMS. The PPMS cohort (n = 632, 9.3%) reported a mean (standard deviation (SD)) age of 64.3 (8.9) years; 62.7% were female; the SPMS and RRMS cohorts were younger and had a higher proportion of females. The NARCOMS PPMS cohort differed in age, time from onset and diagnosis, and proportion of females compared to population-based and clinical trial cohorts. Median (25%, 75%) number of comorbidities was 2 (1, 2) for each cohort with vascular comorbidities being most frequently reported. Conclusion: The NARCOMS population provides a different perspective on persons with PPMS than clinical trials. A better understanding of the characteristics of persons with PPMS may help address unmet needs in this population.",
keywords = "comorbidities, disease attributes, health care utilization, NARCOMS, Primary progressive multiple sclerosis, survey",
author = "Amber Salter and Thomas, {Nina P.} and Tuula Tyry and Cutter, {Gary R.} and Marrie, {Ruth Ann}",
note = "Funding Information: ity.33 The course of MS was not reported in either The author(s) declared the following potential con-study. Prior studies of hospitalizations in MS have flicts of interest with respect to the research, author-largely grouped individuals with different clinical ship, and/or publication of this article: T.T. and A.S. courses together and have reported widely ranging have nothing to disclose. R.A.M. receives research annual frequencies of hospitalizations from 2.7% to funding from the Canadian Institutes of Health over 25%, although hospitalizations appear to be Research, Crohn{\textquoteright}s and Colitis Canada, Multiple declining over time.34 In British Columbia, Canada, Sclerosis Scientific Foundation, Multiple Sclerosis persons with PPMS had higher rates of hospitaliza-Society of Canada, National Multiple Sclerosis tions than those with relapsing MS.34 Society, Research Manitoba, Rx&D Health Research Foundation, and the Waugh Family Chair in Multiple Sclerosis, and has conducted clinical trials funded by Sanofi-Aventis. N.P.T. is an employee of Genentech, Inc. G.R.C. served on data and safety monitoring boards for AMO Pharma, Apotek, Biogen Idec, GlaxoSmithKline Pharmaceuticals, Gilead Pharma-ceuticals, Horizon Pharmaceuticals, Merck Pharma-ceuticals, Modigenetech/Prolor, Opko, Neuren, Sanofi-Aventis, Teva, and NHLBI (protocol review committee); NICHD (OPRU oversight committee), consulting or advisory boards for CereSpir, Inc., Consortium of MS Centers, D3, Genentech, Genzyme, Innate Therapeutics, Janssen Pharmaceuticals, Klein Buendel, Inc., Medday, MedImmune, Novartis, Opexa Therapeutics, Receptos, Roche, Savara Inc., Somahlution, Spinifex Pharmaceuticals, Teva, TG Therapeutics, and Transparency Life Sciences. Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/ or publication of this article: NARCOMS is supported, in part, by the Consortium of Multiple Sclerosis Centers (CMSC) and the Foundation of the CMSC. This study was funded, in part, by Genentech, Inc. Publisher Copyright: {\textcopyright} 2017, The Author(s), 2017.",
year = "2018",
month = jun,
day = "1",
doi = "10.1177/1352458517711274",
language = "English (US)",
volume = "24",
pages = "951--962",
journal = "Multiple Sclerosis Journal",
issn = "1352-4585",
publisher = "SAGE Publications Ltd",
number = "7",
}