The overall goal of the Spaulding New England Regional Spinal Cord Injury Center (SNERSCIC) is to provide a multidisciplinary comprehensive system of care for individuals with SCI as a basis for conducting research that extends the existing evidence base for SCI rehabilitation. Our focus is health, function and technology, especially for the most vulnerable, to empower individuals with SCI to lead fulfilling and meaningful lives.
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. SNERSCIC studies in 2016-2021 include:
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.
The SCI-FI instrument was designed specifically for persons with SCI, regardless of level or severity of injury. The content of the SCI-FI is based upon an extensive review of the literature, input from patients with SCI, and clinician focus groups, and is grounded within the International Classification of Function, Disability, and Health (ICF) framework.
With the development of the SCI-FI/AT, we now have available SCI-FI scales that evaluate a person’s ability to function using adaptive technology in the areas of Basic Mobility, Self-Care, Ambulation, Fine Motor, and Wheelchair function. There are 178 total items in the final SCI- FI/AT domain item banks. Short forms are aptly named as a short paper-based version of the full item banks of each functional domain of the SCI-FI/AT, which is currently administered via computer as a computer adaptive test (CAT).
Aim 1 –Create a SCI-FI/AT inpatient short form that can be completed efficiently by clinicians on patients while they are in the inpatient rehabilitation setting. This form can be used as part of the SCI Model Systems (SCIMS) National Database inpatient assessment, and for general use by clinicians and researchers.
Aim 2 – We will conduct a pilot study to evaluate the inter-rater reliability of having clinicians complete the SCI-FI/AT inpatient short forms with a sample of patients in the SNERSCIC SCIMS network.
Lead Principal Investigator: Dr. Mike Boninger, UPitt
SNERSCIC Lead: Bethlyn Houlihan, MSW, MPH
These tables are abstracted from the clinical trial registration website at www.clinicaltrials.gov using the search term “Spinal Cord Injury.” The most recent update occurred December 5, 2016, at which time the search found a total of 831 SCI trials. Of these, the status of 271 trials was known. The trials listed in these tables are currently actively recruiting or soon-to-be recruiting subjects.
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.
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.
Lead Principal Investigator: Jennifer Coker, MPH, Rocky Mt. Regional Spinal Injury System, Craig Hospital
SNERSCIC Lead: Ross Zafonte, MD
This study involves a one-time phone interview to find out about how people with SCI are using Complementary and Integrative Healthcare (CIH). SNERSCIC is a collaborating site conducting interviews.
Specific Aim 1: Characterize utilization of CIH in people with SCI in the SCIMS (i.e., who is using which therapies and why?).
Specific Aim 2: Compare rates of utilization of CIH in people with SCI to the US population.
Specific Aim 3: Identify barriers to use of CIH for people with SCI (i.e., for those not using CIH, why not?).
Specific Aim 4: Determine the relationship between utilization of CIH and functional and psychosocial outcomes collected concurrently at SCIMS NDB Form II follow-up.
Lead Principal Investigators: Greg Nemunatis, MD, Mary Jo Roach, PhD; Northeast Ohio Regional Spinal Cord Injury Model System, Case Western University
SNERSCIC Lead: Chloe Slocum, MD, MPH
The goal of this project is to look at early predictors in trauma data of later treatment outcomes in traumatic SCI. The project will merge trauma data for each person newly injured with their SCI Model System National Database data. SNERSCIC is a collaborating site. This project involves pulling existing data from a patient’s medical record.
Lead Principal Investigators: Mark Nash, PhD; S. Florida SCI Model System, Miami Project
SNERSCIC Lead: J. Andrew Taylor, PhD
This is a population study of persons with chronic SCI assessing stakeholder perceived and objectively measured cardio-endocrine disease risks, their change over time, and effectiveness of remediation. The overarching goals of the study are to inform stakeholders with SCI and their health care professionals of the degree of risk sustained for cardioendocrine disease both early after SCI and as a function of aging. SNERSCIC is a collaborating site.
Carvalho, Sandra & Leite, Jorge & Jones, Felipe & R. Morse, Leslie & Zafonte, Ross & Fregni, Felipe. (2017). Study adherence in a tDCS longitudinal clinical trial with people with spinal cord injury . Spinal Cord. doi:10.1038/s41393-017-0023-5
S E Skeels, D Pernigotti, B V Houlihan, T Belliveau, M Brody, J Zazula, S Hasiotis, S Seetharama, D Rosenblum & A Jette. SCI peer health coach influence on self-management with peers: a qualitative analysis Spinal Cord (2017) 55, 1016–1022 (2017)
Thibaut A, Carvalho S, Morse L, Zafonte R, Fregni F. Delayed pain decrease following M1 tDCS in spinal cord injury: A randomized controlled clinical trial Neurosci Letters. 2017 Sep 29;658:19-26. doi: 10.1016/j.neulet.2017.08.024.
Vergo Houlihan, B; Brody, M; Everhart-Skeels, S; Pernigotti, D; Burnett, S; Zazula, J; Green, C; Hasiotis, S; Belliveau, T; Seetharama, S; Rosenblum, D; Jette, A (2017). Randomized Trial of a Peer-Led, Telephone-Based Empowerment Intervention for Persons With Chronic Spinal Cord Injury Improves Health Self-Management. Archives of Physical Medicine and Rehabilitation, 98, 1067–1076
B Houlihan, S Everhart-Skeels, D Gutnick, D Pernigotti, J Zazula, M Brody, S Burnett, H Mercier, S Hasiotis, C Green, S Seetharama, T Belliveau, D Rosenblum, A Jette. Empowering Adults with Chronic Spinal Cord Injury to Prevent Secondary Conditions Archives of Physical Medicine and Rehabilitation, Volume 97, Issue 10, 2016, Pages 1687-1695.e5, ISSN 0003-9993.
Houlihan, B; Brody, M; Plant, A; Skeels, SE.; Zazula, J; Pernigotti, D; Green, C; Hasiotis, S; Jette, A (2016). Health care self-advocacy strategies for negotiating health care environments: Analysis of recommendations by satisfied consumers with SCI and SCI practitioners. Topics in Spinal Cord Injury Rehabilitation, 22, 13-26.
Full article is available from NARIC under Accession Number J73144.
Research in Focus post SCI Advocates and SCI Practitioners Share Their Strategies
Garshick E, Mulroy S, Graves DE, Greenwald K, Horton JA, Morse LR. Active lifestyle is associated with reduced dyspnea and greater life satisfaction in spinal cord injury. Arch Phys Med Rehabil. 2016; 97(10):1721-7.
Timothy Belliveau, Alan M. Jette, Subramani Seetharama, Jeffrey Axt, David Rosenblum, Daniel Larose, Bethlyn Houlihan, Mary Slavin, Chantal Larose Developing Artificial Neural Network Models to Predict Functioning One Year After Traumatic Spinal Cord Injury. Archives of Physical Medicine and Rehabilitation, Volume 97, Issue 10, 2016, Pages 1663-1668.e3, ISSN 0003-9993.
Mercier HW, Ni P, Houlihan BV, Jette A. (2015) Differential impact and use of a telehealth intervention by persons with MS or SCI. American Journal of Physical Medicine and Rehabilitation, 94(11), 987-999. PMID: 25888652.
Jette, A.M., Slavin, M.D., Ni, P., Kisala, P.A., Tulsky, D.S., Heinemann, A.W.,… Williams, S. (2015). Development and initial evaluation of the SCI-FI/AT. The Journal of Spinal Cord Medicine, 38(3). DOI 10.1179/2045772315Y.0000000003
Tian F, Ni P, Mulcahey MJ, Hambleton RK, Tulsky D, Haley SM, Jette AM. (2014) Tracking functional status across the spinal cord injury lifespan: Linking pediatric and adult patient-reported outcome scores. Archives of Physical Medicine and Rehabilitation, 95(11), 2078-2085. PMID: 24933214.
Heinemann A, Dijkers M, Ni P, Tulsky D, Jette, AM. (2014) Measurement properties of the Spinal Cord Injury-Functional Index (SCI-FI) short forms. Archives of Physical Medicine and Rehabilitation, 95(7), 1289-1297. PMCID: PMC4382921.
Sinha R, Slavin MD, Ni P, Jette AM. (2014). Functional ability level development and validation providing clinical meaning for Spinal Cord Injury Functional Index scores. Archives of Physical Medicine and Rehabilitation, S0003-9993(14), 01271-4.
Doherty AL, Battaglino RA, Donovan J, Gagnon D, Lazzari AA, Garshick E, Zafonte R, Morse LR. Adiponectin is a candidate biomarker of lower extremity bone density in men with chronic spinal cord injury. J Bone Miner Res. 2014 Jan;29(1):251-9. doi: 10.1002/jbmr.2020.
Houlihan BV, Jette A, Friedman RH, Paasche-Orlow M, Ni P, Wierbicky J, Williams K, Ducharme S, Zazula J, Cuevas P, Rosenblum D, Williams S. (2013) A pilot study of a telehealth intervention for persons with spinal cord dysfunction. Spinal Cord, 51(6), 715-720.
Jette AM, Tulsky DS, Ni P, Kisala P, Slavin M, Dijkers MP, Heinemann AW, Tate D, Whiteneck G, Charlifue S, Houlihan B, Williams S, Kirshblum S, Dyson-Hudson T, Zanca J, Fyffe D. (2012) Development and initial evaluation of the Spinal Cord Injury-Functional Index (SCI-FI). Archives of Physical Medicine and Rehabilitation, 93(10), 1733-50.
Tulsky, D. S., Jette, A. M., Kisala, P. A., Kalpakjian, C., Dijkers, M. P., Whiteneck, G., and Pengsheng, N. et al. (2012). Spinal cord injury-functional index: item banks to measure physical functioning in individuals with spinal cord injury. Archives of physical medicine and rehabilitation, 93(10), 1722-1732.
Morse LR, Sudhakar S, Danilack V, Tun C, Lazzari A, Gagnon DR, Garshick E, Battaglino RA. Association between Sclerostin and Bone Density in Chronic SCI Journal of Bone and Mineral Research. 2012;27(2):352-359.
Tulsky DS, Jett, AM, Kisala PA, Kalpakjian C, Dijkers MP, Whiteneck G, Ni P, Kirshblum S, Charlifue S, Heinemann AW, Forchheimer M, Slavin M, Houlihan BV, Tate D, Dyson-Hudson T, Fyffe D, Williams S, Zanca J. (2012) The Spinal Cord Injury- Functional Index: Item banks to measure physical functioning of individuals with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 93(10), 1722-32. PMCID: PMC3910090. Also available online: Epub, DOI 2012.05.007.
Houlihan BV, Jette A, Paasche-Orlow M, Wierbicky J, Ducharme S, Zazula J, Cuevas P, Friedman RH, Williams S. (2011) A telerehabilitation intervention for persons with spinal cord dysfunction American Journal of Physical Medicine and Rehabilitation, 90(9), 756-64.
Jette A. Contributor, Chapter 4: Rehabilitation. World Report on Disability WHO, 2011.
Kalpakjian C, Houlihan B, Meade MA, Karana-Zebari D, Heinemann AW, Dijkers MP, Wierbicky JM, Charlifue S. (2011) Marital status, marital transitions, well-being and spinal cord injury: An examination of the effects of sex and time. Archives of Physical Medicine and Rehabilitation, 92(3), 433-440.
Norweg A, Jette A, Houlihan B, Ni P, Boninger M. (2011) Patterns and benefits of driving a modified vehicle after spinal cord injury: Findings from the National Spinal Cord Injury Model Systems. Archives of Physical Medicine and Rehabilitation, 92, 477-483.
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.”View Article
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.”Listen to Podcast
Presentations from experts at Gaylord Hospital targeted to any health professionals working in any medical setting with SCI patients from a 14-week course offering a comprehensive review of neuroanatomy and the rehabilitative process related to SCI. Available presentations to date include SCI 101 and information about SCIACT, the CT Chapter of United Spinal.View Presentations
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. You can view an online summary here.View pdf Summary
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 2017View Presentation
Symposium, ACRM, Atlanta, GA, Oct 2017View Summary/Abstract
American Spinal Injury Association (ASIA), Albuquerque, NM, April 26-29, 2017, and the Health & Disability Research Institute Research Series, Boston, MA, Jan 2017View Presentation
Plenary keynote address, 2017 American Academy of Physiatrists (AAP) Annual Meeting, Las Vegas, NV on February 11. It discussed the public health impact that physical activity has had on consumers with a range of disabilities, including SCI. Dr. Blauwet also discussed the emergence of Paralympic Sports Medicine and how universal design can be applied to sports and physical activity programs.View Summary
Workshop presentation, International Spinal Cord Society (ISCoS) Meeting, Vienna, Austria, Sept. 14-16, 2016. Click here for related abstractView Summary
Presentation which focused on cutting edge research findings for clinical and multicultural applications. International Spinal Cord Society (ISCoS), Vienna, Austria, Sept. 14-16, 2016View Summary/Abstract
International Spinal Cord Society (ISCoS), Dublin, Ireland, October 24-26, 2017.View Summary/Abstract
ACRM, Atlanta, GA, Oct 2017View Poster
ASIA, Albuquerque, NM, April 26-29, 2017View Poster
ISCoS, Vienna, Austria, Sept. 14-16, 2016View Poster
ASIA, April 14-16, 2016, Philadelphia, PA
ACRM, Nov. 2-4, 2016, Chicago, IL
ASIA, April 14-16, 2016, Philadelphia, PAView Poster
Multiple posters related to NESCIT were presented by Dr. Rosenblum and Ms. Pernigotti at various professional conferences from 2015-2017, covering different aspects on the development and use of the Toolkit.View Posters
American SCI Professionals (ASCIP), Aug 31-Sept 3, 2014, St. Louis, MO
ASIA/ISCoS, May 14-16 2015, Montreal, Canada
Association of Occupational Therapists (AOTA) Conference, April 16-19, 2015, Nashville, TN
ASIA/ISCoS, May 14-16 2015, Montreal, Canada
ASIA/ISCoS, May 14-16 2015, Montreal, Canada
Association of SCI Professionals (ASCIP), Sept 6-9, 2015, New Orleans, LA
ACRM, Nov. 12-16, 2013, Orlando, FL
American Public Health Association (APHA) Annual Meeting, Nov. 2-6, 2013, Boston, MA
ASIA, May 14-17, 2014, San Antonio, TX
Dr. Slavin presented “The SCI Pediatric Activity Measure, and the Pediatric Measure of Participation”. The Stephen M. Haley Memorial Lecture is awarded to an individual who has made significant contributions to the field of rehabilitation research. The Howard H. Steele Conference was a full day pre-course of the American Spinal Injury Association (ASIA) Scientific Meeting, and the only international educational effort focused entirely on pediatric SCI/D.View More Info
This award recognizes significant contributions to the field of rehabilitation. Dr. Jette presented “Moving from Dissemination to Implementation”, in which he discussed several considerations that guide the choice of implementation strategy, and emphasized the need to direct resources to designing and applying strategies to consistently deliver what is known to work into practice.Learn More
Dr. Cheri Blauwet, MD, Co-Director of Dissemination and Knowledge Translation, visited the Peter Harrison Center for Disability Sport at the University of Loughborough, UK, in early February. Dr. Blauwet provided a series of lectures focused on the impact of sport on persons with disabilities, including SCI.VIEW NEWS POST
The following studies are provided as a community service for individuals who may be interested in additional study opportunities. SNERSCIC may not be involved in the design or implementation of these studies, nor do we necessarily endorse any studies listed here.
Study One is a six-week training with the Ekso, participants come in 2-3x/week for 6 weeks. We screen and train them with the Ekso and then at the end of the 6 weeks they have a gait lab study to see the biomechanics and interactions between the exoskeleton and bones/joints.
Study Two is looking (in addition to the biomechanics) at how Ekso training could change bone density. Participants have blood tests and a CT scan of the lower leg done at Worcester Polytechnic Institute before and after the training. They come in 3x/week for 6 months. They also have the gait lab analysis done at the end of 6 months.
Compensation varies depending on the number of sessions attended, each training session is $20, screening and assessments $50. For Study One, compensation is up to $460, and for Study 2, up to $1990.
Please contact Catherine Adans-Dester at 617-952-6321 or firstname.lastname@example.org for more information.
Title: PET-fMRI assessment of brain microglia in spinal cord injury
IRB Number: 2014P000340
Description: 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, as well as healthy controls. This research study requires two visits to the Martinos Center for Biomedical Imaging in Charlestown. The first visit will last 1-2 hours, and the second visit will last up to 6 hours and will include blood-draws and a PET-MRI session.
Eligible participants will receive up to $325 compensation.
Please contact Clas Linnman, PhD, or Linda Dahlberg, PhD, Massachusetts General Hospital, at LDAHLBERG@mgh.harvard.edu for more information.
Click here for listing from the Model Systems Knowledge Translation Center
Study One — hour web-based wheelchair transfer training program
Principal Investigator: Dr. Mike Boninger, UPitt SCI Model System
About the Study
Study Two — Accessibility Barriers Survey – Wheelchair Users
Principal Investigator: Alicia Koontz, PhD, UPitt
The purpose of this research study is to understand how various locations and surfaces in the community affect your ability to transfer independently to and from your wheeled mobility device.
Could this Study Be Right for You?
What Participants Can Expect
The study involves completing an online survey that will take approximately 30 minutes or less to complete.
If interested, contact UPitt.
United Spinal: Studies Currently Recruiting People with SCI/D
Click here for the list of studies currently recruiting.
**PLEASE NOTE: These studies may have specific criteria, so be sure to check the inclusion criteria first.
CareCure.org Forum: Surveys and Research Studies Page
Click here to see all the postings to CareCure for SCI-related research.
IMPORTANT NOTE: Please be aware that ANYONE can post a study here, so vet a posting very carefully before replying. Also, you may need to register to be able to view some content and/or reply on the forum.