This National Spinal Cord Injury (SCI) Awareness Month, we’d like to acknowledge the long history of the SCI Model System Centers! While NIDILRR is turning 40 this year, the SCI Model System Centers are actually closer to 50! In 1967 and 68, experts testified before Congress about the need for a national effort to improve and expand rehabilitation services to people with SCI. After several meetings and conferences with recognized experts, administrators at the Rehabilitation Services Administration (RSA) at the Department of Health, Education, and Welfare proposed a conceptual model for a center or centers that would address gaps in services and supports for this population. According to Robert Humphreys in his historical overview of the SCI Model Systems presented at the 1978 Model Systems Conference, “The model provides for rapid case finding and referral, early rehabilitation coordinated by a highly sophisticated team, a mechanism to use all the necessary community agencies and services to facilitate rehabilitation success, and a long-term community follow-up program to assure that gains and adjustments are maintained.”
Between 1970 and 1973, the Model Systems grew from a single research and demonstration grant to eleven Regional Model Spinal Cord Injury Systems under RSA. The regional centers, funded as demonstration projects, measured and analyzed the effectiveness and costs of the model system approach, as well as evaluating regional and local variations and modifications in SCI service delivery. In 1973, Congress provided legislation as part of the Rehabilitation Act (Rehab Act) authorizing the continued development of the regional systems. In 1978, the Rehab Act was amended and NIDILRR was established (then NIDRR), and the regional systems were moved from RSA to their current home.
The SCI Model System Centers have been funded about every five years since then. Each center must conduct individual research projects and collaborate on multicenter projects. In addition to conducting clinical trials and collaborative research, these centers also train emerging scholars in conducting high quality research in disability and rehabilitation. All of the centers collect meaningful data on the demographics, injury characteristics, and outcomes of the individuals who pass through the model systems, following these individuals over many years. The National SCI Model System Database, established in 1973, is now the world’s largest and longest active SCI research database and the most extensive source of available information about the characteristics and life course of individuals with SCI.
Over their five decades of research, the SCI Model System Centers have contributed so much to the evolution of SCI care and rehabilitation, from improving emergency and acute care outcomes and identifying trends in patient demographics and injury characteristics, to addressing health disparities and secondary conditions in those aging with SCI. (Learn more in this overview and history[PDF]) Today, there are 14 centers across the US, plus 5 additional centers which contribute follow-up data to National SCI Model System Database hosted at the National Spinal Cord Injury Statistical Center (first established in 1975 as the National SCI Data Research Center). Here are some of the areas where the current centers are focusing:
- Reducing injury and increasing participation through improved wheelchair transfer training and wheelchair maintenance;
- Complementary and integrative health care and SCI;
- Improving walking outcomes with non-invasive brain stimulation and robotics;
- Reducing pressure injury risk by combining sensors and pressure relief behaviors;
- Improving health and wellness through increased activity or diet interventions;
- Reducing substance use risk while managing pain;
- Addressing bowel and bladder dysfunction.
The SCI Model System Centers produce a wealth of resources, from peer-reviewed literature and conference presentations to consumer publications and videos. Explore the consumer resources on everything from physical and mental health after SCI to returning to work, available through the Model Systems Knowledge Translation Center (MSKTC). MSKTC also maintains a searchable database of research publications from the Centers.
The National SCIMS Database is available to researchers, policymakers, and others who share the goal of improving the lives of people with SCI. Learn how to access the database and publication policies from the National SCI Statistical Center (PDF).
Explore peer-reviewed literature and other publications from the SCI Model System Centers indexed in the NARIC collection:
- From the 2016-2020 centers
- From the 2011-2016 centers
- From the 2006-2011 centers
- From the 2000-2006 centers
- From the 1995-2000 centers
- From the 1990-1995 centers
- From the 1984/1985-1990 centers*
*NARIC’s records for NIDILRR-funded projects go back to the 1980s, but some coverage is spotty and older data is missing entirely. As we celebrate NIDILRR’s 40th anniversary, we are working on recovering some of this older data. Stay tuned!