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Center for Large Data Research & Data Sharing in Rehabilitation

Rehabilitation Dataset Directory: Dataset Profile


Dataset: Spinal Cord Injury Model System (SCIMS)

Basic Information
Dataset full name: Spinal Cord Injury Model System
Dataset acronym SCIMS
Summary The SCIMS collects data across the 14 federally-sponsored Model Spinal Cord Injury System Centers, 3 subcontract-funded regional centers and follow-up data from the 7 previously funded centers. The National Spinal Cord Injury Statistical Center (NSCISC) is collecting data from the SCIMS since1975. Each SCIMS reports both general & specific research data to NSSISC. They are funded by the National Institute on Disability and Rehabilitation Research (NIDRR). The SCIMS provide comprehensive specialty services, from point of injury through rehabilitation and re-entry into full community life. In addition to collecting data immediate post-injury, the SCIMS collects 20 years of follow-up data for their participants.
Key Terms Spinal Cord Injury, Model System , Rehabilitation Outcomes, Data, and Quality of care
Study Design Longitudinal
Data Type(s) Clinical & Survey
Sponsoring Agency/Entity National Institute on Disability and Rehabilitation Research (NIDRR), Office of Special Education and Rehabilitative Services, U.S. Department of Education
Health conditions/Disability measures
Health condition(s) Spinal Cord Injury (SCI), SCI associated injuries and medical complications
Disability Measures ASIA (American Spinal Injury Association) impairment scale, ASIA Motor Index Scale; and Functional Independence Measure (FIM) assessing limitations in body structure and functions.
Measures/outcomes of interest
Topics Socio-demographic data including employment, occupation, Educational attainment, Veteran status, SCI diagnoses, Cause of SCI injury, Work relatedness, Extent of limitations in body structures and functions, Other associated injuries, Short and long-term treatment outcomes, Discharge Disposition. Follow-up data on hospitalization, Rehabilitation, Physical independence, Types of support, Socioeconomic status, Alcohol use, depression, ICD-9 Cause of death, Respirator use, Self-perceived health status, Pain severity, Life statisfaction, Mobility, Assistive and information technology use, Modified vehicle use & ownership, Employment, Community participation
Sample
Sample Population Individuals with Spinal Cord Injury
Sample Size/Notes Registry: 11,457 patients (1986-2010):
Form I baseline demographic and inpatient clinical information: 27,553 patients (1986-2010)
Form II follow-up data: 102,668 forms entered (1985-2010)
covers approximately 13% of all new SCI cases
Unit of Observation Individual
Geographic Coverage From current 14 SCIMS, previously funded centers and other four centers which provide follow up data only*.
The Rocky Mountain Regional Spinal Injury System, Englewood CO
National Capital Spinal Cord Injury Model System, Washington DC
Georgia Regional Spinal Cord Injury Care System, Atlanta GA
Midwest Regional Spinal Cord Injury Care System, Chicago IL
New England Regional Spinal Cord Injury Center, Boston MA
University of Pittsburgh Model Center on Spinal Cord Pittsburgh PA
Texas Model Spinal Cord Injury System, Huston TX
Northwest Regional Spinal Cord Injury System Seattle WA
University of Michigan Model Spinal Cord Injury Care Ann Arbor MI
Northern New Jersey Spinal Cord Injury System West Orange NJ
Mount Sinai Spinal Cord Injury Model System, New York NY
Northeast Ohio Regional Spinal Cord Injury, Cleveland OH
Regional Spinal Cord Injury Center of the Delaware Valley, Philadelphia, PA
UAB Model Spinal Cord Injury Care System, Birmingham AL
National Spinal Cord Injury Statistical Center, Birmingham AL

*St. Joseph's Hospital and Medical Center, Phoenix, AZ
*Santa Clara Valley Medical Center, San Jose, CA
*Virginia Commonwealth University, Richmond, VA
*University of Missouri, Columbia, MO
Geographic specificity SCIMS regions
Data Collection
Data Collection Mode Initial intake: in person
Follow up: phone/mail
Years Collected 1986 - present: Registry:
1986 - present: Form I data (baseline demographic & inpatient clinical information):
1985 - present: Form II data (follow-up):
Data Collection Frequency Collected at discharge, 1 year after injury, 5 years after injury, and follow-up every 5 years there after
Strengths and limitations
Strengths Only database for SCI, large sample size, use of valid and reliable measures, geographic and patient diversity, comprehensiveness, availability of long-term prospective follow-up information, good case identification, and rigorous quality control procedures.
Limitations Data is not population based, inclusion of only model system patients, losses to follow-up
Data details
Primary Website http://msktc.washington.edu/sci/
Data Access https://www.nscisc.uab.edu/login.aspx
Data Access Requirements Data Use Agreement, No Cost
Summary Tables/reports https://www.nscisc.uab.edu/public_content/pdf/2010%20NSCISC%20Annual%20Statistical%20Report%20-%20Complete%20Public%20Version.pdf
Dataset components (where applicable) Form I - collects data during the acute-phase post-SCI; Form II - collects data on follow-up
Selected papers
Technical NA
Other Papers DeVivo MJ, Go BK, Jackson AB. Overview of the national spinal cord injury statistical center database J Spinal Cord Med. 2002 Winter;25(4):335-8. http://www.ncbi.nlm.nih.gov/pubmed/12482178
Chen Y, Deutsch A, DeVivo MJ, Johnson K, Kalpakjian CZ, Nemunaitis G, Tulsky D. Current research outcomes from the Spinal Cord Injury Model Systems. Arch Phys Med Rehabilitation 2011;92:329-31.
http://www.sciencedirect.com/science/article/pii/S0003999310009925



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