Participate in a Study
The following studies are currently looking for SCI participants:
Core Project: National Spinal Cord Injury Database
SNERSCIC contributes data to the National Spinal Cord Injury Database, which includes more than 32,000 individuals with SCI. Information is gathered from individuals, with their consent, during hospitalization and through follow up at one and five years after injury, and every five years thereafter. Data from the SCIMS National Database provides information about the course of recovery, trends in cause and severity of SCI, health service delivery and costs, treatment, and rehabilitation outcomes. The database is a rich source of data for research and analysis of outcomes.
Site-Specific Modular Study: Physical and Psychosocial Trajectories as Patients with Spinal Cord Injury (SCI) Transition from Inpatient Rehabilitation to the Community
The proposed project will seek to identify individual, person-level trajectories to define the phenotype for those at greatest risk for declining mobility and/or increasing psychosocial distress (i.e., anxiety, depression, social isolation) as they transition home. Digital phenotyping involves the “moment-by-moment quantification of the individual-level human phenotype in situ using data from personal digital devices.” Smart phones allow for passive collection of accelerometry to assess level of activity, GPS coordinates to document mobility in the community, and call logs to examine social connectivity and support. These passive digital data components can be coupled with active smart phone based data collection using Patient Reported Outcome Measures (PROM) developed with advanced psychometrics and administered using precise computerized adaptive tests (CATs). This granular data provides dynamic information on individual-level mobility and psychosocial trajectories without significant burden (i.e., passive data requires no subject input). These individual trajectories can be assessed for common factors among those who demonstrate declining mobility and/or increasing psychosocial distress to derive predictive algorithms.
Equity and Quality in Assistive Technology (EQuATe) 3.0 for Individuals with Spinal Cord Injury
Led by the University of Pittsburgh, SNERSCIC is joining other SCI model systems nationwide to recruit for a research study that is looking at the assistive technology used by individuals with spinal cord injury (SCI) and those with diagnoses that affect the spinal cord. This will include information about smart- home technologies and wheelchair make, model, repairs, and training experiences among those who use a wheelchair. We will also look at characteristics that impact the quality of assistive technology received and the impact of assistive technology on health-related outcomes.
You may be eligible if you:
You are 18 years of age or older.
You have an injury or diagnosis that affects the Spinal Cord.
Your injury or diagnosis occurred at least a year ago.
You have access to a computer, tablet or smartphone with internet access.
You are able to speak and read English.
What would we ask you to do:
If you are interested in participating or would like more information, please open the study link:
https://tinyurl.com/EQuATestudy2023 or contact the study coordinator at smithij@upmc.edu or (412) 392-7374.
INSPIRE Lab – Technology to Promote Functional Independence
PI: Randy Trumbower, PT, PhD
Our mission is to INSPIRE persons living with paralysis to move. We research and develop cutting-edge technologies that integrate rehabilitation and engineering principles to promote functional independence in persons with catastrophic injury to their nervous system.
To view all of our current research studies, visit our Inspire Lab Site
If interested in considering participation in one of our studies, please reach out to us at inspirelab@partners.org.
Spaulding Neuroimaging Laboratory
- We are using combined Positron Emission Tomography (PET) and Magnetic Resonance Imaging (MRI) to find out if the brains and spinal cords of people with spinal cord injury (SCI) and with neuropathic pain are different from people with SCI who do not suffer from neuropathic pain. Eligibility Criteria:
- Complete or incomplete Spinal Cord Injury at or below C5
- No history of other major medical, neurological, or psychiatric illness
- With neuropathic pain or without neuropathic pain
- No use of anticoagulants such as coundadin, plavix or lovenox
- Between the ages of 18-70
- Non-Smoker
- Not claustrophobic
- Right-Handed
Study compensation is between $275 and $525. If you are interested in participating, please contact us at: spinalcordinjury@partners.org or 617-952-6940
2. If you are between the ages of 18-50, have become spinal cord injured within 3-24 months at or below C5, and have some arm strength, you may be eligible for a new exercise focused study, based at Spaulding Hospital Cambridge. We want to know if electrically-stimulated rowing can improve brain health in individuals with a recent C5-T12 spinal cord injury. Study compensation is up to $900.
If you are interested in participating, please contact us at: spinalcordinjury@partners.org or 617-952- 6940
Clas Linnman, PhD, Spaulding Neuroimaging Lab; Ryan Solinsky, MD, Spinal Cord Injury Physician
SNERSCIC Studies in 2016-2022
As a Spinal Cord Injury Model System Center, SNERSCIC conducts research and contributes data to the National Spinal Cord Injury Statistical Center. SNERSCIC conducts center-specific research (at its own center), and also conducts multi-center or module studies with other SCIMS Centers.
Core Project: National Spinal Cord Injury Database
SNERSCIC contributes data to the National Spinal Cord Injury Database, which includes more than 32,000 individuals with SCI. Information is gathered from individuals, with their consent, during hospitalization and through follow up at one and five years after injury, and every five years thereafter. Data from the SCIMS National Database provides information about the course of recovery, trends in cause and severity of SCI, health service delivery and costs, treatment, and rehabilitation outcomes. The database is a rich source of data for research and analysis of outcomes.
SCIMS Collaborative Module: Exploring the Impact of Social Networks for Persons with SCI
We will use the validated Personal Network Survey for Clinical Research (PERSNET) instrument that elaborates and quantifies the structure and composition of individual social networks using graph theory metrics. These metrics are distinct compared to other measures of social support in their ability to capture density and granular details of an individual unique social network. Our study will characterize the relationship of social network characteristics with health (medical complications post-injury), function (mobility and self-care), and social participation (satisfaction with social roles and activities and independence) among those with SCI and create a robust foundation on which we can begin to devise possible interventions. Network-based interventions have been shown to be efficacious in other widely prevalent diseases, such as addiction disorders and hypertension. The project would enable examination of social network structures for potentially at-risk subgroups by race/ethnicity, level of injury and completeness, gender, and socioeconomic status, and provide a detailed analysis of how the social environment interacts with demographic and injury-related factors to lead to health disparities in different sub-groups.
Module #1: Equity and Quality In Assistive Technology For Individuals With SCI 2.0 (Equate)
Lead Principal Investigator: Dr. Mike Boninger, UPitt
SNERSCIC Lead: Diana Pernigotti dpernigotti@gaylord.org 203-679-3563
Aim 1 – Collect descriptive data on Assistive Technology (AT) used by individuals with Spinal Cord Injury (SCI) including wheelchair make, model, failures, and repairs. This data will enable us to track the impact of insurance market changes, find differences in wheelchair failures, and present this information to wheelchair users.
Hypothesis:
The prevalence and type of wheelchair failures will vary across manufacturers.
Device satisfaction will be inversely correlated with adverse consequences.
Response in service time for repairs will vary by vendor and service region.
Users will experience additional consequences secondary to waiting for a repair to be completed.
Intensity of wheelchair use will be associated with incidence of repairs.
Aim 2 – Explore the influence of individual characteristics such as financial strain, educational quality, health literacy, geographic location, and self-efficacy on differences in AT quality and other health related outcomes for individuals with SCI.
Quick Reviews of SNERSCIC Research
These are quick, easy-to-understand summaries of research we have done in recent years, without all the research mumbo-jumbo. Enjoy! And please contact us with any questions!
Spinal Cord Injury-Functional Index: Item Banks to Measure Physical Functioning in Individuals with Spinal Cord Injury
Presentations and Media
New York Times article: "I Use a Wheelchair. And, Yes, I'm Your Doctor"
From the article: “People with disabilities often express fear or dissatisfaction with our health care system because they face poor access and discriminatory attitudes. This must change. Perhaps having more doctors with disabilities is one solution.”content
ACRM Podcast Episode 3: Spinal Cord Injury Peers My Care My Call pilot intervention study
Hosted by Dr. Ford Fox, Ms. Houlihan and Skeels discuss the unique My Care My Call pilot intervention study, which used peer health coaching over the phone to effectively activate people with chronic SCI in managing their own health and health care. From the podcast: “[Participants] realize they can decide where they want to go next, and have the support to do that… There are so many things leading up to someone being ready to make an actual plan, and we really learned that those are the things that have to happen first.”
Put On Your Air Mask First
Workshop presentation on wellbeing in SCI professionals and strategies to combat burnout together. International Spinal Cord Society (ISCoS), Dublin, Ireland, October 24-26, 2017.
Valuing All Forms of Diversity and Inclusion in Medicine: The Experience of Physicians with Disabilities
Partners Grand Rounds presentation on Jan 28, 2016, looking at legislation, barriers, and future solutions for inclusion of people with disabilities in medicine and the health professions.
Shifting Focus: Delivering Peer-Led, Person-Centered Support Services in SCI Rehabilitation, Community Settings & Online
Presentation on the design, efficacy, and practice of skills for the My Care My Call peer health coach phone intervention for chronic SCI. Presented within a 4-hour instructional pre-course. American Congress of Rehabilitation Medicine (ACRM) Meeting, Atlanta, GA, Oct 2017 and the SCI National Conference, Canada, Nov 2017
Experimental Approaches to Enhance Physiological Function after Spinal Cord Injury
Symposium, ACRM, Atlanta, GA, Oct 2017