The National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System: Twenty Years of Contributions to Clinical Service and Research.

The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) established the Burn Model System (BMS) in 1993 to improve the lives of burn survivors. The BMS program includes 1) a multicenter longitudinal database describing the functional and psychosocial recovery of burn survivors; 2) site-specific burn-related research; and 3) a knowledge dissemination component directed toward patients and providers. Output from each BMS component was analyzed. Database structure, content, and access procedures are described. Publications using the database were identified and categorized to illustrate the content area of the work. Unused areas of the database were identified for future study. Publications related to site-specific projects were cataloged. The most frequently cited articles are summarized to illustrate the scope of these projects. The effectiveness of dissemination activities was measured by quantifying website hits and information downloads. There were 25 NIDILRR-supported publications that utilized the database. These articles covered topics related to psychological outcomes, functional outcomes, community reintegration, and burn demographics. There were 172 site-specific publications; highly cited articles demonstrate a wide scope of study. For information dissemination, visits to the BMS website quadrupled between 2013 and 2014, with 124,063 downloads of educational material in 2014. The NIDILRR BMS program has played a major role in defining the course of burn recovery, and making that information accessible to the general public. The accumulating information in the database serves as a rich resource to the burn community for future study. The BMS is a model for collaborative research that is multidisciplinary and outcome focused.