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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 and follow-up data from 5 previously-funded centers. The National Spinal Cord Injury Statistical Center (NSCISC) has collected data from the SCIMS since 1986 that record dates of onset of injury from as early as 1972. Each SCIMS reports both general and specific research data to NSCISC. They are funded by the National Institute for Disability, Independent Living, and Rehabilitation Research (NIDILRR). The SCIMS provide comprehensive specialty services, from point of injury through rehabilitation and re-entry into full community life. In addition to collecting data immediately post-injury, the SCIMS collects years of follow-up data from 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

Department of Health and Human Services (HHS)

Administration for Community Living (ACL)

National Institute for Disability, Independent Living, and Rehabilitation Research (NIDILRR)
Health Conditions/Disability Measures
Health Condition(s)

Anxiety disorders, Body mass index (BMI)/obesity, Chronic pain, Depression, Diabetes, ICD-9/10 diagnostic codes, Spinal cord injury (SCI), Traumatic brain injury (TBI)
Disability Measures Functional limitations (ADLs and/or IADLs), Self-care disability, Special equipment use/assistive technology
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 satisfaction, Mobility, Assistive and information technology use, Modified vehicle use and ownership, Employment, Community participation
Sample
Sample Population Individuals with Spinal Cord Injury
Sample Size/Notes

Registry: 13,650 patients (1986-2016):

Form I baseline demographic and inpatient clinical information: 32,159 patients (1986-2016)

Form II follow-up data: 116,985 forms entered (1987-2016)

Covers approximately 6% of all new SCI cases
Unit of Observation Individual
Continent(s) North America
Countries

United States
Geographic Coverage

There are 14 SCIMS and five follow-up centers.

  • UAB Model Spinal Cord Injury Care System, Birmingham AL
  • Southern California Spinal Cord Injury Model System, Downey CA
  • The Rocky Mountain Regional Spinal Injury System, Englewood CO
  • South Florida Spinal Cord Injury Model System, Miami FL
  • Georgia Regional Spinal Cord Injury Care System, Atlanta GA
  • Midwest Regional Spinal Cord Injury Care System, Chicago IL
  • Kentucky Regional Model Spinal Cord Injury System, Louisville KY
  • New England Regional Spinal Cord Injury Center, Boston MA Spaulding-Harvard Spinal Cord Injury System, Boston MA
  • University of Michigan Model Spinal Cord Injury Care Ann Arbor MI
  • Northern New Jersey Spinal Cord Injury System West Orange NJ
  • University of Pittsburgh Model Center on Spinal Cord Pittsburgh PA
  • Regional Spinal Cord Injury Center of the Delaware Valley, Philadelphia PA
  • Northwest Regional Spinal Cord Injury System Seattle WA

Follow-up centers:

  • Mount Sinai SCI Model System, New York NY
  • Santa Clara Valley Medical Center, San Jose CA
  • Texas Regional SCI System, Houston TX
  • Woodrow Wilson Rehabilitation Center, Fishersville 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 and inpatient clinical information)

1987 - 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 thereafter
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 https://www.nscisc.uab.edu/
Data Access Guidelines for Accessing the SCIMS National Database:
https://www.nscisc.uab.edu/PublicDocuments/reports/pdf/Using%20the%20SCIMS%20National%20Dataset.pdf
Data Access Requirements Data Use Agreement, No Cost
Summary Tables/Reports https://www.nscisc.uab.edu/Public/Facts%20and%20Figures%20-%202017.pdf
Data Components

Form I: collects data during the acute-phase post-SCI

Form II: collects data on follow-up
Similar/Related Dataset(s)

Spinal Cord Injury Rehab (SCIRehab)


Other Model Systems data:

Burn Injury Model Systems (BMS)

Traumatic Brain Injury Model Systems National Database (TBIMS)
Selected Papers
Other Papers NA
Technical

Data Dictionaries:

https://www.nscisc.uab.edu/Public_Pages/Database


2016 Annual Report:

https://www.nscisc.uab.edu/public/2016%20Annual%20Report%20-%20Complete%20Public%20Version.pdf

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The Rehabilitation Research Cross-dataset Variable Catalog has been developed through the Center for Large Data Research & Data Sharing in Rehabilitation (CLDR). The Center for Large Data Research and Data Sharing in Rehabilitation involves a consortium of investigators from the University of Texas Medical Branch, Cornell University's Yang Tan Institute (YTI), and the University of Michigan. The CLDR is funded by NIH - National Institute of Child Health and Human Development, through the National Center for Medical Rehabilitation Research, the National Institute for Neurological Disorders and Stroke, and the National Institute of Biomedical Imaging and Bioengineering. (P2CHD065702).

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Acknowledgements: This tool was developed through the efforts of William Erickson and Arun Karpur, and web designers Jason Criss and Jeff Trondsen at Cornell University. Many thanks to graduate students Kyoung Jo Oh and Yeong Joon Yoon who developed much of the content used in this tool.

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