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The Sonya Slifka Longitudinal Multiple Sclerosis Study: methods and sample characteristics

Minden, S L, Frankel, D, Hadden, L, Perloff, J, Srinath, K P, Hoaglin, D C·2006·Multiple Sclerosis Journal

DOI 10.1191/135248506ms1262oa

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Abstract

The Sonya Slifka Longitudinal Multiple Sclerosis Study follows a population-based cohort of approximately 2000 people with multiple sclerosis (MS) to study demographic and clinical characteristics, course of illness, utilization and cost of health services, provider characteristics, use of MS specialists and disease modifying agents, and neurologic, economic and psychosocial outcomes. This report describes the study methodology, presents baseline demographic and clinical data, and evaluates the representativeness of the sample. A stratified random sample of persons with established and recently-diagnosed MS selected from the National Multiple Sclerosis Society (NMSS) mailing lists was supplemented with recently-diagnosed patients recruited through systematic nationwide outreach. Baseline data were collected by computer-assisted telephone interviews derived from standardized instruments; data collection continues at six-month intervals. The cohort was comparable to population-based and clinical samples with respect to demographics, course, relapse rate, symptoms, and severity of disability. Almost two-thirds of the cohort needed help with activities of daily living, three-quarters were limited in work or other activities, and half had emotional problems that compromised quality of life. The Slifka Study cohort is broadly representative of the MS population and the database can be used to address questions not answered by natural history studies, clinical databases, or population-based surveys.

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Authors: Minden, S. L., Frankel, D., Hadden, L., Perloff, J., Srinath, K. P., & Hoaglin, D. C.
Affiliations: Brigham and Women's Hospital (US)
Abt Global (United States) (US)
Brandeis University (US)
Corresponding author: Minden, S L
ORCID: Minden, S L
Perloff, J
Hoaglin, D C
Venue: Multiple Sclerosis Journal
Publisher: SAGE Publications
Published: 2006-02
Volume: 12
Issue: 1
Pages: 24-38
ISSN: 1352-4585 (ISSN-L)
1477-0970
DOI: 10.1191/135248506ms1262oa
OpenAlex: W2084110857
Cited by: 272
References: 73
Citations by year: 2026: 3 · 2025: 3 · 2024: 11 · 2023: 10 · 2022: 14 · 2021: 18 · 2020: 15 · 2019: 17 · 2018: 19 · 2017: 8 · 2016: 14 · 2015: 22 · 2014: 17 · 2013: 18 · 2012: 9
FWCI: 5.79
Type: journal article
Language: en
Open access: closed
Licence: journals.sagepub.com/page/policies/text-and-data-mining-license (tdm)
Locations: Multiple Sclerosis Journal (publishedVersion)
PubMed (publishedVersion)
Funders: National Multiple Sclerosis Society
Topics: Health Sciences › Medicine › Clinical Neurology › Multiple Sclerosis Research Studies
Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
Health Sciences › Health Professions › Physical Therapy, Sports Therapy and Rehabilitation › Musculoskeletal pain and rehabilitation
Keywords: multiple sclerosis, longitudinal cohort, sample representativeness, clinical course, relapse rate, disability severity, activities of daily living, work limitations, emotional problems, quality of life, health care utilization, health care costs, disease-modifying agents, natural history of disease, computer-assisted telephone interviewing
MeSH terms: Adolescent, Adult, Aged, Aged, 80 and over, Attitude to Health, Costs and Cost Analysis, Demography, Female, Health Status, Health Surveys, Humans, Interviews as Topic, Longitudinal Studies, Male, Massachusetts, Middle Aged, Multiple Sclerosis

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The Sonya Slifka Longitudinal Multiple Sclerosis Study: methods and sample characteristics

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