It’s September and the start of National Spinal Cord Injury (SCI) Awareness Month! Research and development supporting the independence of people with SCI across the lifespan has been an integral part of NIDILRR-funded efforts throughout its 40+ year history. In previous articles we’ve highlighted the history of the SCI Model System Centers, some of the very cool research in robotic exoskeletons, and the remarkable impact of one of the longest running studies of aging with SCI. NARIC Director Mark Odum also reflected on what SCI research means to him personally, as someone who has lived more than 40 years with SCI.
The latest projects continue this long tradition of innovation and impact, advancing technology and interventions, and learning more about what it means to live, learn, and work independently with a spinal cord injury.
The SCI Model Systems
NIDILRR has funded a long-standing Spinal Cord Injury Model Systems (SCIMS) Program to collect longitudinal data and conduct research on SCI. ACL/NIDILRR just announced the new cohort of the SCIMS program grantees (2021-2026). Each center provides rehabilitation care from point of injury through community reintegration and conducts research on recovery and long-term outcomes after injury. These centers also track participants over time, contributing to the National SCI Database. This database, initiated in 1973, now contains data on more than 34,500 people in the US who have sustained traumatic SCI.
Using Tech to Manage Health and Wellness
Several current projects are harnessing technology, from apps to robotics, to improve long-term health and wellness:
- Development and Community Evaluation of a Real-Time System for Monitoring, Feedback, and Training to Prevent Pressure Injuries in Individuals with Spinal Cord Injury, Rancho Los Amigos National Rehabilitation Center (CA).
- iManage Sexual Wellness: Development of a Symptom-monitoring/Self-Management Program to Enhance Sexual Wellness After SCI and TBI, University of Delaware (DE).
- Scale Up Trial of Project WOWii to Increase Exercise Among People with Spinal Cord Injury, Baylor Scott and White Research Institute (TX).
- Collaborative Machines Enhancing Therapies (COMET), Shirley Ryan AbilityLab (IL).
- Promoting Independence and Self-Management Using mHealth, University of Pittsburgh (PA)
- Self-Management Assistance Through Technology (SMART) – Virtual Coaches for Wheelchair Users, University of Pittsburgh (PA).
- Rehabilitation Engineering Research Center on Wearable Robots for Independent Living, New Jersey Institute of Technology (NJ).
Interventions for Independence
These projects are developing, testing, or expanding interventions to improve health, wellness, community participation, and employment:
- Harnessing Social Networks to Personalize Sensor-Driven, Just-In-Time Physical Activity Interventions for Individuals with Spinal Cord Injury, Temple University (PA).
- Rehabilitation Research and Training Center on Health and Function for People with Physical Disabilities Focused on Neurogenic Lower Urinary Tract Dysfunction, MedStar Health Research Institute (MD).
- Building an Evidence-Base for Weight Loss Strategies Among Those with Spinal Cord Injury (SCI), Baylor Scott and White Research Institute (TX).
- The Effect of Gentamicin Intravesical Instillations on Decreasing Urinary Tract Infections in Patients with Neurogenic Bladder After SCI: A Clinical Trial, The Regents of the University of Michigan (MI).
- A Multi-Center Clinical Trial to Evaluate the Effectiveness of Intermittent Hypoxia Therapy in Individuals with Spinal Cord Injury, Shirley Ryan AbilityLab (IL).
- ReInventing Yourself After SCI: A Multi-Site Randomized Controlled Trial of an Intervention to Improve Outcomes After Spinal Cord Injury, Craig Hospital (CO).
- Prolonged Exposure Therapy (PE) for Post-Traumatic Stress Disorder (PTSD) in Spinal Cord Injury (SCI): A Randomized Controlled Trial, Baylor Scott and White Research Institute (TX).
- PHOENIX: Development of a Spinal Cord Injury Peer-Supported Self-Management Intervention, The Medical University of South Carolina (SC).
- Treating Cognitive Deficits in Traumatic Spinal Cord Injury (SCI): A Randomized Clinical Trial, Kessler Foundation (NJ).
- Improving Quality of Personal Care Assistance Services for People with SCI Through Online Education, Kessler Foundation (NJ).
- A Lifestyle Intervention Targeting Enhanced Health and Function for Persons with Chronic SCI in Caregiver/Care-Receiver Relationships: Effects of Caregiver Co-Treatment, University of Miami (FL).
- Translating Transfer Training and Wheelchair Maintenance into Practice, University of Pittsburgh (PA).
Understanding SCI Over the Life Course
A spinal cord injury can have a significant impact on a person’s life. Beyond potential paralysis, people with SCI may also live with pain and higher risk for chronic and secondary conditions such as cardiovascular disease, pressure injuries, and more. These projects seek to understand the full impact of SCI across the life span:
- Characterizing Patterns of Depression, Community Mobility, and Social Engagement in Sub-Acute Spinal Cord Injury, Hannah Warner Mercier, PhD, OTR/L (NY).
- Targeting the Gut Microbiome to Improve Insulin Resistance in SCI, Jia Li, PhD (AL).
- The research team at the Medical University of South Carolina has maintained the SCI Longitudinal Aging Study for almost 50 years. The wealth of data gathered from more than 1,600 participants over the years is fueling several projects to understand SCI over the life course:
- Risk of Opioid Use Disorder and Related Consequences: A Longitudinal Study of Spinal Cord Injury
- Aging and Participation After Spinal Cord Injury: Promoting Utilization to Enhance Community Outcomes.
- Understanding and Promoting Longevity After Spinal Cord Injury: A Mixed Methods Study of Participation, Employment, and Quality of Life.
- Number, Primary, and Secondary Diagnoses, and Costs of Emergency Department Visits in a Population-based Cohort of People with Spinal Cord Injury.
- A Multidisciplinary Approach to Translating New Knowledge into Practice to Promote Health and Well-Being After Spinal Cord Injury.
- Aging and Spinal Cord Injury: A 45-Year Longitudinal Study.
- Number, Primary, and Secondary Diagnoses, and Costs of Inpatient Hospitalizations in a Population-Based Cohort of People with Spinal Cord Injury.
As National SCI Awareness Month continues, we invite you to visit these centers and projects to learn what they do and, for studies that are recruiting participants, how you can be a part of the research. You may also want to explore the Model Systems Knowledge Translation Center’s collection of evidence-based information products and learn how to become an SCI Ambassador to share these important resources with your community!