SCI POWERED NETWORK
The goal of the SCI Powered Network is to build a community-driven framework of credible and trustworthy spinal cord injury information through exchange and dissemination in an inclusive and engaged manner to serve stakeholders within and outside the SCI community.
Information Needs SCI Community Survey
This is a survey created by representatives from the SCI community. The survey focused on how people find SCI information, their challenges and suggestions, and impressions of information. Data collection took place from February-June 2024 with 448 qualified responses. Insights from the survey results can help us understand the information needs of people living with SCI.
SCI Seal of Approval
This effort is to find a way to help people evaluate information. Here we developed guidance on the framework, ranking criteria, review process, and identification for developing information dissemination tools for the SCI community. A future goal is to create an easily identifiable mark to signal which resources are best for people living with SCI.
Information Tools for SCI Artificial Intelligence/LLM Learning
This information was directed by the premise that we can no longer use static databases; the combination of artificial intelligence with human involvement is the tool for the future. Provided in this effort are categories and tools to use to train AI tools and harness human input collaboratively to ensure the right resources are available to the right person at the right time.
SCI Clinical Trial Participation
SCITRIALS.ORG is a new matching tool for clinical trials, which was created for the spinal cord injury community by the spinal cord injury community to connect the scientific community and people living with SCI.
SCITRIALS.ORG was created to address some of the challenges users were experiencing on existing clinical trial sites, by providing information on trials specific to SCI, and are filtered to contain studies from legitimate universities, research centers, and hospitals. Additionally, the site allows users to save a search unique to their preferences and then receive email updates when relevant trials in their area come online.
To access the continually updated information in the site, simply sign up to use the free platform at SCITRIALS.ORG – we hope to see the majority of our community adopt the site, and encourage users to spread the news about this new tool throughout their networks also.
SCITRIALS.ORG is a joint initiative of the North American Spinal Cord Injury Consortium (NASCIC) and endParalysis.org – with development provided by fuelService.org
SCI Research Process for the Community
To be an effective participant in a clinical trial or even to be an informed consumer of medical treatments or therapies, it is important to understand the research process. It is also important to understand the role of scientific peer review and regulatory oversight of medical treatments. Below is a listing of video and training resource links that provide explanations about the research process, translation, and regulatory oversight.
SCI Research Today: The Journey to a Cure – A Video Series about SCI Research
Navigating a spinal cord injury can be an overwhelming task. From understanding the biology of what has happened at the site of injury, to understanding all of the various topics currently under study – and which ones show the most promise, we have compiled all of the information you need to begin your education about spinal cord injury and SCI research.
Gauntlet – The Body of Evidence
This is a general video that explains why a scientific review is important and the process of research from discovery to a clinical trial.
Research 101
This link directs you to training modules titled Research 101: Everyone Can Do It. This was developed at the University of Kentucky, College of Health Sciences. These modules will help to demystify the research process, and they are also directed toward the spinal cord injury and disability communities.
Navigating the Ecosystem of Translational Science (NETS)
Translational Science is defined by the National Institutes of Health as “the process of turning observations in the laboratory, clinic, and community into interventions that improve the health of individuals and populations – from diagnostics and therapeutics to medical procedures and behavioral interventions.” This training video and toolkit explains the translational research process specifically for drug development, and it is presented in lay terms.
Patients Matter Video Series FDA
The U.S. Food and Drug Administration (FDA) is the regulatory agency in the United States that oversees drugs, therapies, treatments, and devices that make medical claims. Gaining input from people living with medical conditions is critical for their decision-making and helps the FDA understand the end-user needs. It is also important for those living with SCI to understand the FDA process for approval. This link explains both the process and patient input.
https://www.fda.gov/patients/learn-about-fda-patient-engagement/patients-matter-video-series
Spinal Cord Injury Trials Vocabulary – Acronym Chart
www.csro.com/your-resources/spinal-cord-injury-trials-vocabulary-acronym-chart/
Researchers Engaging SCI Consumer Partners
The NASCIC has been vital to my research, from the development of ideas in the form of grants to study execution. The process has been seamless and members have always proven willing to engage with my research team. The process has been so simple and helpful that I can’t imagine writing another grant without NASCIC support! Most importantly, NASCIC has changed how my laboratory thinks about research – from the very basic questions we ask to the outcome measures we employ.
Underlying Concept
The inclusion of all stakeholders in the research process will yield stronger, more relevant, and more useful results leading to greater uptake. People living with a disease bring an expertise that is traditionally missing from the research team. Including people living with a disease as research partners should be based on the underlying principles of reciprocal relationships, co-learning, partnerships, transparency, honesty, and trust.
Points of engagement in the research process
- Research question – collaborate to develop and refine a question that matters
- Funding application – involve in the grant development and review process
- Develop methods – partner to design a study people want to participate in
- Conduct research – integrate as equitable members of the research team
- Analyze data and publish – seek input on interpretation of results
- Disseminate – collaborate with networks to ensure results reach end users and have impact
Examples of engagement
- Develop a consumer advisory board for the research study
- Seek a community partner
- Develop a relationship with a consumer organization
Currently Available Resources
NASCIC
- Integrated Knowledge Translation (IKT) Guiding Principles
- Project Engagement Database
- SciTrials.org
- Partner Projects
- Research Engagement Guidance
Patient-Centered Outcomes Research Institute (PCORI)
Engagement Rubric – Patient Centered Outcomes Research Institute
Canadian Institutes of Health Research (CIHR)
Guide to Researcher and Knowledge User Collaboration
National Center for Advancing Translational Sciences
Toolkit for Patient-Focused Therapy Development
Milken Institute Faster Cures
FDA
CDRH Patient Science and Engagement Program
ISCoS 2018
Tips on engaging people with SCI in Research
Archived webinars
- PCORI – https://www.pcori.org/events/past?type=110
- Michael Smith Foundation for Health Research – https://www.msfhr.org/ktconnects#Gainforth
- Online SCI Research Seminars – Panel on Science Communication and Engagement – https://www.youtube.com/watch?v=9mj1gJ_wqpY
Compensation for Engagement
The nature, amount, and details of financial compensation should be relative to the circumstances, expertise, and degree of input of the engaged partner and at rates consistent with other members of the research team. Compensation is an allowable budget item in grant budgets. Remember – research partners are not research participants. Compensation could be on an hourly basis, by stipend, by full day or half day, by salary, and should be flexible to financial restrictions the person with the disease may be under. Alternative forms of compensation may include gift cards, postal money orders, donation to an organization of their choice in lieu of direct payment, gifts, in-kind exchanges. Covering expenses, such as travel, event fees, etc. is separate from compensation.
COVID-19 Resources
SCI Moving Forward – Webinar Series
In response to the pandemic, we have created a microsite for our webinar series called SCI Moving Forward: A Response to COVID-19.
There are 10 episodes, all of which you can access here at no cost:
ACRM SCI Webinar Series: Lay Summary of Evidence Related to COVID-19 in People Living with Spinal Cord Injury
On February 16, 2021 NASCIC President Dr. Kim Anderson was a guest speaker on ACRM’s SCI webinar series and presented the findings of the COVID-19 Whitepaper.
To watch the webinar – CLICK HERE
CBC Article: Some with disabilities worry they’ll die if they get COVID, say slow vaccine rollout puts them at risk.
CLICK HERE to read full article
AHS COVID-19 Community Conversation for Edmonton Zone
Health and Wellness Resources
Adapt to Perform: Wheelchair Fitness and Motivation
ADAPT SitStrong Wheelchair Workouts
Shepherd Exercise App
For More Info Visit: Shepherd.org
National Center on Health, Physical Activity and Disability (NCHPAD)
COVID-19 Nutrition and Shopping Guide
https://www.newmobility.com/2020/04/covid-19-nutrition-and-shopping-guide/
Five Strategies for Safe Shopping
https://www.newmobility.com/2020/04/five-strategies-for-safe-shopping-in-the-time-of-covid-19/
Dr. Amit Sood – Stress Management and Resilience Training
Resources Shared by Members
Check out ASIA’s newest educational product which explains in layman’s terms the various components of the ISNCSCI exam.
The ISNCSCI Exam brochure answers the most-asked questions:
- What is ISNCSCI
- What does the ASIA Impairment Scale (AIS) grade mean
- Who will perform the exam?
Model Systems Knowledge Translation Center (MSKTC) – Spinal Cord Injury
The MSKTC works closely with researchers in the 14 Spinal Cord Injury (SCI) Model System Centers to develop resources for people living with spinal cord injury and their supporters. These user-friendly resources are grounded in evidence and available in a variety of formats such as printable PDF documents, videos, and slideshows.
The 𝗔𝗰𝘁𝗶𝘃𝗶𝘁𝘆-𝗕𝗮𝘀𝗲𝗱 𝗧𝗵𝗲𝗿𝗮𝗽𝘆 𝗖𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆 𝗼𝗳 𝗣𝗿𝗮𝗰𝘁𝗶𝗰𝗲 (𝗔𝗕𝗧 𝗖𝗼𝗣) is excited to announce the launch of Spinal Moves, a podcast conversation about activity-based therapy.
Join hosts Hope Jervis Rademeyer and Anita Kaiser as they chat with people living with spinal cord injury, clinicians who work in neurological settings, and researchers who study activity-based therapy. This series is produced in coordination with Hope Jervis Rademeyer, Anita Kaiser, Praxis Spinal Cord Institute, and the ABT CoP.
PRAXIS Neuroplasticity & FES Cycling Webinar and Resources
This webinar was organized to share the latest developments in FES cycling and experiences in implementation to promote adoption and access to FES across hospital and community settings.
Webinar Presentations
Resources
- IFESS on FES for SCI: https://ifess.org/spinal-cord-injury/
- Canadian Activity-Based Therapy Community of Practice: https://praxisinstitute.org/research-care/key-initiatives/activity-based-therapy/abt-cop/
- Spinal Cord Injury Treatment Centre Society (SCITCS): In Northern Alberta, SCITCS supports persons experiencing SCI who are interested in FES cycling at the YMCA or any of the community centres with FES cycling systems by paying their assessment fees and their gym membership fees for 1 year.
- Activity-based Therapy Podcast: Spinal Moves
- Research Article – Non-gait-specific interventions for the rehabilitation of walking after SCI: role of the arms
- List of FES funding sources
- ASIA Article Experimental Treatments for Spinal Cord Injury: What you Should Know
NASCIC Publications
COVID-19 Whitepaper
The COVID-19 pandemic has had a significant impact on the SCI community this past year. In order to keep the SCI community informed, NASCIC has taken the initiative to put together a white paper of all current evidence-based information and knowledge about COVID-19 related to those living with SCI.
Updated edition now available! Click to download the September 2021 edition
Previous Editions
March 2021 – click to download
November 2020 – click to download
Spanish Translation White Paper – Known Evidence Related to COVID
(Evidencia Relacionada con COVID-19 en personas que viven con Lesión Espinal)
Click to download publication
Click to download the Report
Needs of the Community Living with SCI in North America
In late 2019 NASCIC initiated a needs assessment of the SCI community through an online survey. This survey received 644 responses from individuals across North America and now we have produced a white paper entitled, Needs of the Community Living with SCI in North America, to disseminate the results of the survey and to illustrate how they are guiding NASCIC’s future projects.
Please read to learn about what the community living with SCI is experiencing – click here to access the publication
SCI 2020 Panel and Survey Report
In February 2019, the Executive Council of NASCIC was invited to attend the NIH SCI 2020: Launching a Decade of Disruption meeting in Maryland. The Executive Council delivered a presentation called With Us, Not for Us regarding the perspective of those living with SCI, which was informed by a community survey. The results of the survey, summary of the panel, and thoughts of the future are presented here in a final report.
