Resources for Research
Data collection resources used for our studies are outlined below. - National Institute of Neurological Disorders and Stroke (NINDS) - International Spinal Cord Society (ISCoS)
Examinations
- Capabilities of Upper Extremity Test (CUE-T):Measures functional limitation and assesses the amount of difficulty experienced in performing specific actions with one or both arms and hands in individuals with tetraplegia.
- Graded Redefined Assessment of Strength, Sensibility and Prehension Test (GRASSP): A clinical impairment measure for the upper limb for use after tetraplegia. The measure includes three domains which are important in describing hand function. The three domains are: strength, sensibility, and prehension.
- International Standard for Neurological Classification of Spinal Cord Injury (ISNCSCI): This classification tool involves a sensory and motor examination to determine the neurological level of the injury and whether the injury is complete or incomplete. The ISNCSCI defines neurological level as the most caudal level at which sensory and motor function are intact.
Questionnaires
Physical Functioning/Interventions
- Autonomic Dysfunction Following SCI
- Bowel Function Basic Data Set (1.1)
- Cardiovascular Basic Data Set (1.1)
- Douleur Neuropathique (DN4)
- EuroQol Five Dimensions Questionnaire (EQ-5D-5L)
- International SCI Pain Basic Data Set (2.0)
- Lower Extremity Basic Data Set
- Lower Urinary Tract Function Basic Dat Set (1.0)
- Sexual Function Basic Data Set (1.0): Male/Female
- Short Form (36) Healthy Survey (SF-36)
- Spinal Cord Independence Measure III (SCIM III)
- Spinal Interventions and Surgical Procedures Basic Data Set (1.0)
- Upper Extremity Basic Data Set (1.1)
- Urinary Tract Infection
Quality of Life Assessments
- Ability to Participate in Social Roles/Activities
- Anxiety
- Cognitive Function
- Depression
- Emotional/Behavioral Dyscontrol
- Fatigue
- Positive Affect and Well-Being
- Post Traumatic Stress Disorder Checklist
- Post Traumatic Growth Inventory
- Quality of Life Basic Data Set (1.0)
- Satisfaction with Social Roles/Activities
- Stigma
Resources for SCI Patients
General SCI Information
- The Christopher and Dana Reeve Foundation: charitable organization dedicated to finding treatments and cures for paralysis caused by spinal cord injury and other neurological disorders. This website contains both information on current research efforts and also resources for people living with SCI.
- Model Systems Knowledge Translation Center: provides resources for people living with spinal cord injury and their supporters, with an emphasis on translating research to application in everyday life.
- NorCal Spinal Cord Injury Foundation: an organization focused on supporting and connecting the SCI community in Northern California.
- SCI-U: a series of video courses on learning to live with spinal cord injury.
- Sexuality after SCI: a website with information and further resources regarding love and intimacy after SCI.
- University of Alabama at Birmingham Spinal Cord Injury Model System (UAB-SCIMS) Information Network: a resource to promote knowledge in the areas of research, health, and quality of life for people with spinal cord injuries, their families, and SCI-related professionals.
SCI Research Resources for SCI Patients
- ClinicalTrials.gov: this registry will have information on SCI (and other) clinical trials past and present, their enrollment criteria, location, and information on how to contact their teams. It is run by the United States National Library of Medicine (NLM) at the National Institutes of Health (NIH).
- National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR): ACL's National Institute on Disability, Independent Living, and Rehabilitation Research is the federal government’s primary disability research organization.
- SCI Trials Finder: SCOPE’s scitrials.org website, which scrapes from clinicaltrials.gov
Miscellaneous Resources for SCI Patients
- Administration for Community Living: government administration that supports community living for older adults and people with disabilities.
- Unite 2 Fight Paralysis: organization dedicated to advocacy, education, and support for research.
Zuckerberg San Francisco General Hospital (ZSFG) Spinal Cord Injury (SCI) Clinical Guidelines Summary
SCI Goals of Care
- Level of Spinal Cord Injury is confirmed and communicated to the entire healthcare team as early as possible.
- Definitive surgical intervention is accomplished and patient is started on the SCI treatment protocol as early as possible.
- Harm events are prevented.
- Environment of safety is promoted.
- Patient and family receive education regarding injury and plan of care
- Timely discharge to appropriate rehabilitation services is facilitated.
- Readmission is prevented.