National Spinal Cord Injury Statistical Center (ICPSR 36567)

Alternate Title:   NSCISC

Principal Investigator(s): University of Alabama

Summary:

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 annuals reports and "Facts and Figures at a Glance" which can be accessed here.

The National Spinal Cord Injury Database has been in existence since 1973 and captures data from an estimated 6% of new SCI cases in the U.S. Since its inception, 28 federally funded SCI Model Systems have contributed data to the National SCI Database. As of March 2016, the database contained information on 31,645 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.

Within the scope of the Spinal Cord Injury Model System program, the purposes of the National SCI Database are as follows:

  1. to study the longitudinal course of traumatic SCI and factors that affect that course;
  2. to identify and evaluate trends over time in etiology, demographic, and injury severity characteristics of persons who incur a SCI;
  3. to identify and evaluate trends over time in health services delivery and treatment outcomes for persons with SCI;
  4. to establish expected rehabilitation treatment outcomes for persons with SCI; and
  5. to facilitate other research such as the identification of potential persons for enrollment in appropriate SCI clinical trials and research projects or as a springboard to population-based studies.

The Database, however, is not intended to study the effectiveness of model systems care as compared to other systems of health care delivery. It is also not by itself intended to gather and maintain population-based data on spinal cord injuries.

Access Notes

Study Description

Scope of Study

Subject Terms:    databases, demographic characteristics, disabilities, injuries, life expectancy, rehabilitation, rehabilitation programs, statistical data, statistical models, trends

Geographic Coverage:    United States

Data Collection Notes:

The National Spinal Cord Injury Statistical Center welcomes the use of their database by external researchers who share our goal of improving lives of persons with SCI. Anyone from the scientific community who wishes to use data from the Database can access it. Non-affiliated NSCISC entities who do not have personal and NSCISC center identifiers may gain access to the database. For guidelines on requesting access to the database, visit: https://www.nscisc.uab.edu/nscisc-database.aspx.