National Spinal Cord Injury Statistics Center (NSCISC) publicly accessible data

Author ORCID

Yuying Chen 0000-0003-3512-5316

Publication Date

12-31-2021

Abstract

The NSCISC welcomes the use of data for the purposes of improving the lives of persons with spinal cord injury (SCI). De-Identified Data collected before September 1, 2021 are freely available for download. De-Identified Data are stripped of all HIPAA-defined identifiers, including names, geographic subdivisions smaller than a state, elements of dates (except year) related to an individual, telephone numbers, fax numbers, email addresses, social security numbers, and medical record numbers.

Note: This record corresponds to publicly available data from the NSCISC collected between 1973-2021. Access to the most current records is restricted. See [this catalog entry] for how to access data post-2021.

The National Spinal Cord Injury Statistical Center (NSCISC) is operated by the University of Alabama at Birmingham Department of Physical Medicine and Rehabilitation through funding from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). NSCISC supports and directs the collection, management, and analysis of the world's largest and longest spinal cord injury (SCI) research database. Organizationally, NSCISC is currently at the hub of a network of 14 NIDILRR-sponsored and 5 subcontract-funded Spinal Cord Injury Model Systems located at major medical centers throughout the United States. In addition to maintaining the national SCI database, NSCISC personnel conduct ongoing, database-oriented research. NSCISC produces annual reports.

The National Spinal Cord Injury Model Systems (SCIMS) Database actively collects data on Spinal Cord Injuries (SCI) and has been in existence since 1973. It captures data from an estimated 6% of new SCI cases in the U.S. Since its inception, 31 federally funded SCI Model Systems have contributed data to the National SCIMS Database. As of August 16, 2024, the database contained information on 54,041 (Registry + Form I) persons who sustained traumatic spinal cord injuries. To assure comparability of data acquired by personnel in various centers, rigid scientific criteria have been established for the collection, management and analysis of information entered into the database. National Spinal Cord Injury Statistical Center staff has also developed quality control procedures that further enhance the reliability and validity of the database.

De-identified data collected before September 1, 2021 are available for request, including data obtained during initial: hospital care (Form I); data obtained at post-injury years 1, 5, 10, 15, 20, 25, 30, 35, 40, 45, and 50 (Form II); and mortality data (Record Status).

De-identified data collected before October 1, 2016 are available for request, including data obtained during initial: hospital care (Form I); data obtained at post-injury years 1, 5, 10, 15, 20, 25, 30, 35, and 40 (Form II); and mortality data (Record Status).

Keywords

Disabilities, injuries, life expectancy, rehabilitation, statistical data, statistical models, spinal cord, neurological

Repository

NSCISC

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