CSRO and NASCIC challenge approach and priorities for SCI 2020
The focus of a recent two-day meeting sponsored by the National Institutes of Health (NIH) uncovered yet again the challenge for those living with spinal cord injury to have their voices heard when it comes to how research dollars will be spent over the next decade.
SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research was framed as the opportunity for broad input on SCI research that would look beyond the traditional barriers and lead to collaboration around the key SCI research questions. With approximately US$154-million designated by three different organizations (NIH, US Department of Defense and the Craig Neilson Foundation) for SCI research during the next decade the opportunity to make a real difference is significant.
“I will be very curious to find out what the researchers will do with the information they received from those of us with lived experience who spoke about the current needs of our population,” says Barry Munro, Ontario Neurotrauma Foundation Chief Development Officer and Chair of the Canadian/American Spinal Cord Research Organizations (CSRO/ASRO). Barry and other members of the Executive Council of the North American SCI Consortium (NASCIC) brought the voice of the SCI community to the gathering of scientists, therapists, clinicians and the SCI community. “This continues to be a very siloed group.”
Barry presented the findings gathered from a survey of more than 1,800 people, the majority of whom offered their lived experience with SCI. “The overwhelming consensus was that people with lived experience of spinal cord injuries are looking for increased function and relief from secondary conditions like chronic neuropathic pain and the restoration of bowel and bladder function,” Barry and other Executive Council members reflected in a communication to the community. “I wish they would stop focusing on the “home run” and grab the low-hanging fruit that could make a measurable difference in the lives of so many people,” he says.
Barry emphasized that the SCI community sees itself as a strong viable potential partner, bringing the rich experience of the community fully into research from the prioritization of projects to the participation in identifying solutions. “It may sound blunt, but people are dying from secondary conditions. I cannot stress enough the urgency of this situation and the relatively modest investment it would take to turn it around.”