Learning Lessons through Collaboration
All SCIMS centers contribute data to the national Spinal Cord Injury Model Systems database, the world’s largest longitudinal database for SCI research. More than 36,400 people with traumatic SCI have been enrolled in the database since it was created in 1973, including more than 1,300 participants from our NNJSCIS. Each year, the NNJSCIS enrolls more than 60 newly injured participants each year, collecting information on demographics, cause of injury, and injury severity. Participants then complete follow-up interviews every few years, collecting information on employment, health, functioning, and quality of life after spinal cord injury. The lessons we have learned through our participation are contributing to improved quality of life for people with SCI.
Improving Quality of Life through Research
Through the NNJSCIS, we are continuing to find ways to help individuals improve their mobility, minimize medical complications, and participate fully in the community. Two new research projects underway are looking at solutions to two very different problems that affect quality of life. Improving bladder management is the focus of a new study comparing two oral medications for their ability to control symptoms while minimizing side effects. Maintaining a stable housing situation can be difficult after SCI. A second study explores how often moving occurs after injury and the way understanding changes in housing affects participation in community life, access to healthcare services, and long-term health
Maintaining Mobility through Training
For many with SCI, wheelchairs are the main means of mobility. Using wheelchairs safely and efficiently is essential to minimizing injuries and participating safely in the community. In collaboration with our SCIMS partners, we developed a wheelchair skills training program to help people with SCI address real challenges, such as managing steps and curbs. Because wheelchair breakdowns are common, we developed a course on wheelchair maintenance. Knowing how to fix common causes of breakdowns helps individuals stay active at home, in their communities, and in the workplace. The impact on quality of life is growing as other facilities offer these programs for persons with SCI.
Empowering Individuals and Families
NNJSCIS researchers also work closely with the Model Systems Knowledge Translation Center to create and share resources that help people with SCI maximize their health and participation in community life.
Advancing Quality of Care
Our patient education videos on Bowel Management and Pressure Ulcer Prevention have consistently placed in the top five most viewed on the Foundation’s YouTube channels. Other centers in the U.S. are using these resources to educate their patients on these important topics– a clear indication that these resources are addressing priorities in self-care in the wider community of people with SCI and related disorders. More informative videos and podcasts can be viewed on Kessler Foundation’s YouTube and Sound Cloud channels.
The contents of this website were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90SI5026). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this website do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government.