Overview of the national spinal cord injury statistical center database.

OBJECTIVE

An evaluation of the history, design, and status of the database of the National Spinal Cord Injury Statistical Center (NSCISC) was undertaken to identify its continued relevance.

RESEARCH DESIGN

A systematic review was conducted of goals, content, and quality control procedures, as well as its suitability and public availability for conducting future epidemiologic and health services research.

RESULTS

The NSCISC database contains information on approximately 29,000 persons injured since 1973 and treated at any regional model spinal cord injury system within 1 year of injury. The NSCISC database is structured longitudinally with data collected at discharge, 1 year after injury, 5 years after injury, and every 5 years thereafter. The database includes information on demographics, injury severity, medical complications, surgical procedures, types and amounts of therapy, length of stay, charges, and both short-term and long-term treatment outcomes. Strengths include 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 include lack of population basis, inclusion of only model system patients, losses to follow-up, and other missing data. Recent content additions include detailed information on each treatment phase, depression, substance abuse, environmental barriers to community integration, and patient identifying information. A process exists for researchers to gain access to the data.

CONCLUSIONS

The database remains a valuable resource. Future plans include linkage to other databases to enhance research capability, a published research compendium, and development of a user's guide to facilitate database usage.