Currently Recruiting
The following NERSCIC studies are currently looking for participants:
National Spinal Cord Injury Model Systems Outcomes Database Study (NSCIMS DB)
The purpose of the this database study is to allow researchers and healthcare professionals to evaluate trends over time for many aspects of spinal cord injury. Data collection begins during the inpatient rehabilitation stay, is updated approximately one year after injury, and every five years thereafter. No medical procedures are involved and information is gathered through a one-on-one interview by phone or in person.
Eligible participants for follow-up interviews:
1. Consumers with a diagnosis of traumatic SCI who received their initial inpatient rehabilitation at the New England Regional Spinal Cord Injury Center at Boston Medical Center (previously named Boston City Hospital, University Hospital, and Boston University Medical Center), Gaylord Specialty Healthcare, or Hospital for Special Care.
2. At least 18 years age at injury
Study involves:
35-45 minute interviews by phone or in person
You will receive $25 for completing each follow-up interview at 1 year after injury, and each five years thereafter. (Years 1, 5, 10, 15, 20…)
If you received your inpatient rehabilitation at any of the NERSCIC Network hospitals, have moved or changed your contact information, and are interested in continuing your participation in these important follow-up interviews, please contact:
Diana Pernigotti
dpernigotti@gaylord.org
1-866-429-5673 ext. 3563 (toll free)
Please provide your name, phone number and best day/time to call,
and/or your email address so we can contact you about your next follow-up interview.
My Care My Call (MCMC)
No Longer Recruiting
My Care My Call (MCMC) is designed to test if a peer-led empowerment training program delivered by phone over a six month period can improve access to quality primary care and preventative services for people with traumatic spinal cord injury (SCI). MCMC and Peer Health Coaches provide goal-setting support, health care self-advocacy training, information, and referrals to try to help individuals with SCI with problems they may face in finding and maintaining quality primary care, including preventive screenings and prevention of secondary conditions. Coaches offer tools to help prepare people for office visits, as well as information and encouragement to connect people to community resources, services for equipment, and other resources related to primary care. MCMC incorporates phonecalls from a peer health coach, a user-friendly Resource Guide, and recorded vignettes from peers. Read more about how My Care My Call could offer help and support for primary care, equipment, or health-related issues.
Eligible participants:
1. Have a non-progressive spinal cord injury
2. Have an injury that occurred at least one year ago
3. Must be at least 18 years of age and living in MA or CT
Participation in the Study Group involves:
Weekly phonecalls x 2 months
Bi-weekly phonecalls x 2 months
Monthly phonecalls x 2 months
Each phonecall is approximately 20-30 minutes
Equity and Quality in Assistive Technology (EQuATe)
for Individuals with Spinal Cord Injury
No Longer Recruiting
NERSCIC is joining eight other model systems to explore wheelchair equipment and services provided to individuals with SCI of different ethnic, economic, and social backgrounds. The goal of this study is to improve wheelchair services for all individuals with SCI equally, to improve overall health and participation in life. This study explores many individual factors that may influence the quality of equipment prescribed and how satisfied people are with their equipment. Factors that could have an impact on the equipment people receive include race, income, health literacy, discrimination, and trust in the health care system. Learning about wheelchair failures will help individuals with SCI make informed choices about their wheelchair equipment.
Eligible participants:
1. Have a non-progressive spinal cord injury
2. Have an injury that occurred at least one year ago
3. Must be at least 16 years of age
Study involves:
Two interviews, which may be done at different times:
1st interview- approximately 45 minutes by phone or in person
2nd interview- 30 minutes by phone or in person
Evaluating the Sensitivity and Responsiveness of the
SCI Quality of Life Computer Adaptive Testing (SCI-QOL)
No Longer Recruiting
This study looks at quality of life after spinal cord injury. The SCI-QOL CAT questionnaire will measure changes in key areas at different stages of the recovery process. Questions are based on vasrious aspects of your emotional, social, and physical functioning. This study will also evaluate the sensitivity of the SCI-QOL scales.
Eligible participants:
1. Have a diagnosis of SCI
2. Have received inpatient rehabilitation at Gaylord Specialty Healthcare or Hospital for Special Care
3. At least 18 years of age
Study involves three interviews:
1st interview- 1 hour while inpatient
You will receive $20 for completing this interview
2nd interview- approximately 12 months after injury
30 minutes by phone or in person
You will receive $30 for completing this interview
3rd interview- approximately 24 months after injury
30 minutes by phone or in person
You will receive $40 for completing this interview,
for a total of $90 for participating in all three interviews.
Enhancement and Evaluation of the
SCI-Functional Index (SCI-FI)
No Longer Recruiting
The New England Regional Spinal Cord Injury Center is working to develop a questionnaire that doctors, researchers, and policy makers will use to learn about how having a spinal cord injury (SCI) affects people’s physical functioning in their daily lives. The goal of this study is to create a short SCI-specific questionnaire to be used during your follow-up care appointments, to assess and document changes in your functioning over time. Current functional measures used in SCI evaluate a limited number of functional activities or have a specific focus– either on diagnosis (for example, tetraplegia) or on type of activity (for example, wheelchair use or walking ability but not both). This research study is developing a single functional measure that can be used to assess all types of activities across all SCI levels and degrees of injury. This improved way of measuring function would be a better way to determine if new treatments for SCI effectively improve function. Read more about developing the SCI-FI.
Eligible participants:
1. Have a diagnosis of traumatic SCI- any level, complete or incomplete
2. Must be 18 years or older
Study involves:
One 45 minute interview by phone or in person
You will receive $25 for completing the study
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