Research Funding Advocacy
Within the mission of the North American SCI Consortium is to bring unified achievements in both research and policy. A key funding agency of SCI research is the National Institute of Neurological Disorders and Stroke (NINDS), which is an institute within the National Institutes of Health in the United States. NINDS spends approximately $80M per year on research dedicated toward spinal cord injury. Within each institute is a national advisory council consisting of established research scientists and academics. The National Advisory Neurological Disorders and Stroke (NANDS) Council has two general functions: (1) to advise the NINDS on policy and procedures affecting the extramural research programs and (2) to provide a second level of review for all grant and cooperative agreement applications considered by the Institute for funding. They meet 3 times per year. More about the NANDS Council may be viewed here (https://www.ninds.nih.gov/About-NINDS/Who-We-Are/Advisory-Council)
NASCIC members have decided there is a need to advocate for a redistribution of the research funding to have more emphasis on 1) chronic injury, 2) translational and clinical research to improve care and quality of life, and 3) incorporating the input and voice of those living with SCI and their caregivers in the entire process.
Update: The first step of this advocacy effort was to submit a letter to the NANDS Council regarding these three issues with the listing of the NASCIC members that support this effort at the time of submission. The letter was submitted prior to the September 13, 2018 council meeting. A copy may be viewed here - NASCIC Letter to NINDS_Advisory Council
Consumer Advisory Team for Neuromodulation Working Group for Bladder & Bowel
This project is seeking to create an Advisory Team comprising 5-6 people living with SCI to collaborate with the Neuromodulation for Bladder and Bowel Working Group.
Initiated by the Craig H. Neilsen Foundation Neurogenic Bladder and Bowel Workshop, this Neuromodulation Working Group was created out of a team of approximately 12 individuals from research, industry, clinical, and advocacy organizations to explore neuromodulation interventions for bladder and bowel function for individuals living with SCI. The goal of the Working Group is to promote adaptation and translation of neuromodulation technologies to meet the functional goals of individuals with neurogenic bladder and bowel dysfunctions within a 10-year timeframe. The purpose of the Neuromodulation Working Group is to (1) Identify existing or emerging neuromodulation technology that can be leveraged in our timeline to meet this goal; (2) Identify and describe the steps that the field should take to achieve this goal; (3) Identify the opportunities and barriers that exist in accomplishing this goal; and (4) Create a road map and manuscript to publish the working group’s recommendations.
The role of the Advisory Team will be to help identify and define the bladder and bowel goals of individuals with SCI, and provide a critical perspective for creating a road map that balances individuals’ needs, concerns, preferences, and goals with available and emerging neuromodulation approaches to address them. This will be accomplished by surveying NASCIC members and incorporating their feedback into a written document.
Spinal Cord Injury Trials Toolkit (SCITT)
Full and timely recruitment for SCI clinical trials was identified as a significant barrier to trial completion in 2 separate 2016 SCI meetings (PRAXIS and Ittingen). A SCITT working group was subsequently tasked with finding solutions to this barrier.
SCITT envisions a one-stop shopping website with integrated portals for all clinical trial stakeholders (people with SCI, clinicians referring patients to clinical trials, clinical trial Investigators and Sponsors of clinical trials). Each portal will be customized to each stakeholder with clinical trial information, links, downloadable documents and tools, and more. Unique to the SCITT website is an intent to curate the information available on clinicaltrials.gov and subsequently sorted by SCOPE. Objective data on protocol design, availability of preclinical evidence, regulatory oversight, appropriateness of hypothesis and outcome assessments, etc. will be presented in lay, clinical and scientific summaries. These are intended to assist people with SCI and clinician stakeholders when considering participation and referring patients for clinical trials. Investigators and Sponsors will also be given the opportunity to provide curation input if relevant data is not obvious from the published trial information.
On the portal for people with SCI, not only will curated trial summaries and practical information about clinical trials and participation be available, the clinical trial matcher (CTM) is to be developed using artificial intelligence (AI) software. AI matching is increasingly enhanced with personal health information provided through a patient self-classificator, uploaded documents or full electronic medical records.
NASCIC is collaborating with the SCITT team on the development of the portal for people with SCI.
Enhancing Partnership: Guiding Principles for Conducting and Disseminating Research in Partnership with the SCI Community
Integrated KT (IKT) is an approach to doing research whereby research users as partners alongside researchers throughout the entire research process. The resulting research is more applicable, useful and translatable to end-users than research conducted by researchers alone. Despite the advantages of an IKT approach, only a small minority of KT activities have been planned and implemented in partnerships between researchers and the community. SCI researchers have often been accused of tokenism (i.e. people with SCI are asked to only endorse research to legitimize research programs over which they have little real control) and recent calls have highlighted the need for further support for SCI researchers and research users adopt IKT partnerships. While recommendations for adopting IKT approaches have been put forth, these recommendations are not informed by a process that uses a rigorous methodology (e.g. systematic review) and meaningful engagement of SCI stakeholders to develop IKT best practices. The objective is to develop and implement the first IKT guiding principles for conducting and disseminating research in partnership with the SCI community.
Several members of NASCIC are members of this consensus panel providing input as stakeholders, potential advocates, and adopters of the principles.
Consumer Advisory Team for Robotic Exoskeleton Working Group for Increased Mobility
This project aims to create an Advisory Team comprising 4-6 people living with SCI with diverse perspectives to collaborate with the Robotic Exoskeleton for Increased Mobility Working Group. This project is will be led by representatives from the Florida Institute for Human & Machine Cognition (IHMC) and Myolyn as part of their Discovery Award for the Toyota Mobility Unlimited Challenge. The high-level vision for this exoskeleton is a self-balancing, semi- autonomous, hands-free, highly mobile device that will increase mobility for people with lower limb paralysis.
The role of the Advisory Team will be to help identify and define the mobility goals of individuals with lower limb paralysis and provide a critical perspective for creating a road map that balances individuals’ needs, concerns, preferences, and goals with available and emerging approaches to address them.
Members of the Advisory Team will provide direct feedback to members of the Working Group through the attendance of at least one member of the Advisory Team at monthly Working Group teleconference meetings (1 hour/meeting) and through online communications with Working Group members (e.g. email, Slack, etc.). We will schedule one in-person Working Group meeting to be held this summer at IHMC (travel for Working Group members will be paid for using the Discovery Award). The project is expected to begin in June 2018.