The Profile of a Contemporary Cohort of Participants with Primary Progressive Multiple Sclerosis in the Narcoms Registry

Friday, June 3, 2016: 2:00 PM
Maryland D
Amber Salter, PhD , Division of Biostatistics, Washington University in St. Louis, St. Louis, MO
Nina Thomas, MPH , Genentech, Inc, South San Francisco, CA
Gary Cutter, PhD , University of Alabama at Birmingham, Birmingham, AL
Ruth Ann Marrie, MD, PhD , University of Manitoba, Winnipeg, MB, Canada
Tuula Tyry, PhD , Dignity Health, St. Joseph's Hospital and Medical Center, Phoenix, AZ
Ashley Porter, PhD , Articulate Science, London, United Kingdom of Great Britain and Northern Ireland


A better understanding of the characteristics of persons with primary progressive multiple sclerosis (PPMS) is needed; since fewer persons are diagnosed with this type of MS, comprehensive information regarding PPMS is difficult to obtain.


To describe the demographic and clinical characteristics of NARCOMS participants who self-identify as having PPMS.


We selected NARCOMS registry participants who reported a PPMS diagnosis in the Spring 2015 semi-annual survey for the study. Information from the participants’ enrollment and update surveys was linked to provide a comprehensive description of the demographic and clinical characteristics of this contemporary cohort. The data were analyzed using descriptive statistics.


Of the 8004 participants who completed the Spring 2015 survey, 632 (7.9%) self-identified as having PPMS. The cohort consisted of 62.7% females, with an average (SD) age of 64.3 (8.9) years. Roughly 94% of participants were Caucasian. The average (SD) age of MS onset was 36.0 (11.0) years. The median (IQR) Patient Determined Disease Steps (PDDS) score was 6 (Bilateral Support; 5 [Late Cane], 7 [Wheelchair/Scooter]). High proportions of participants reported fatigue and hand function impairment of at least mild severity (80.5% and 68%, respectively). A low proportion (13.1%) reported a relapse, while 66.9% reported worsening symptoms in the past 6 months. Most participants (89%) were unemployed. Overall, 19.7% reported an emergency room visit in the past 6 months, and 13.8% reported having been hospitalized; a quarter of hospitalizations were due to urinary tract infection. The most frequently reported comorbidities were hypertension (37.7%), high cholesterol (36.1%), depression (31.7%), and osteoporosis (23.7%). Most participants who reported comorbidities were receiving treatment for them. Smoking was reported by 9% of participants.


As expected, registry participants with PPMS were older and more disabled than typically reported by persons with relapsing-remitting MS. More detailed information on various aspects of the lives of people with PPMS will add to our understanding of this disease type and help address the unmet need for effective treatments in this population. Additional important factors such as quality of life and treatment status will be reported.