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NIDRR Burn Model Systems The NIDRR web page http://www.ed.gov/about/offices/list/osers/nidrr/index.html describes the Institute and its objectives. The United States Department of Education’s Office of Special Education and Rehabilitative Services (OSERS), through its National Institute on Disability and Rehabilitation Research (NIDRR), conducts comprehensive and coordinated programs of research and related activities to maximize the full inclusion, social integration, employment, and independent living of disabled individuals of all ages. Balanced between the scientific and consumer communities, NIDRR plays a unique role in federally funded research activities. In addition, NIDRR’s work helps to more fully integrate disability research into the mainstream of our nation's policies regarding science and technology, health care, and economics. NIDRR funds four Burn Model Systems located at the University of Washington, Seattle, Washington; University of Texas Southwestern in Dallas, Texas; Shriners Hospital in Galveston, Texas; and Johns Hopkins Medical Center in Baltimore, Maryland. Each center receives $362,500 (includes indirects) in funding per year over a five-year period. The current funding cycle is 2007-2012. The purpose of the program is to study and characterize the outcome of burn injury with particular attention to improving the rehabilitation of burn survivors, including children. In addition, a national burn outcome data center is funded at the University of Colorado Health Sciences, Denver, Colorado. NIDRR has published a Long-Range Plan. The NIDRR Research Agenda states... Several significant principles guide this discussion of NIDRR’s research agenda. First, a research agenda must allow for flexibility to facilitate response to evolving research questions. In a world where technological innovations and new research results can affect the relevance of other ongoing research, NIDRR must be ready to update its response to changes in the field as they occur and to readily put this response into the research program. NIDRR research will focus on demonstrating outcomes that expand the knowledge base and that meet the needs of persons with disabilities. Documenting outcomes is critical to demonstrating value, increasingly important in a resource-limited society. NIDRR-sponsored research also must balance the demands of consumers for useful solutions with the demands of science for careful and rigorous methodology. NIDRR’s prior research efforts have addressed most aspects of the lives of persons with disabilities. Over time, a framework has emerged that relates these aspects to maximum independence and participation. As explained in previous sections, the new paradigm of disability emphasizes the contextual nature of disability as a product of individual and societal factors. This important paradigm shapes the future research agenda described in this section. This agenda represents our best thinking at the present time about those areas where NIDRR research can assist people with disabilities to maximize their independence and to be fully integrated into American society. These areas include
Effective dissemination and use of disability and rehabilitation research are critical to achieving NIDRR's mission. Research findings can improve the quality of life of people with disabilities and further their full inclusion into society only if the findings are available to, known by, and accessible to all potential users. NIDRR supports a strong dissemination and utilization program that reaches its many constituencies: research scientists, people with disabilities, their families, service providers, policymakers, educators, human resource developers, advocates, entities covered by the ADA, and others. In carrying out this mission, NIDRR's challenge is to reach diverse and changing populations, to present research results in many different and accessible formats, and to use technology appropriately. NIDRR expects the Model Systems to collaborate to obtain rehabilitation outcome data because... ...interdisciplinary and collaborative research is important for explicating the multidimensional qualities of disability. Only through research coordination and collaboration can the findings of basic research be translated into the knowledge base of disability research. NIDRR expects and requires consumers to participate in the research process as described below... The role of disabled consumers in research under the new paradigm, as well as in policy and services, is proactive and participative. Consumers have a role in shaping their environments and in managing the supports and services they require. Research must be more inclusive and participatory, involving not only consumers but also other stakeholders in understanding and interpreting research, in disseminating and applying research findings, and in planning, conducting, and evaluating research. Consumer satisfactionwith research as well as services will be subject to assessment. To be a Model System, the Burn Center must
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