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Building capacity and sustainability for spinal cord injury care and research

The project

Chester Ho, based at the University of Calgary, and his team, received a Brain Canada Platform Support Grant in 2014 to develop a provincial registry  for patients with traumatic or non-traumatic spinal cord injuries. The overall aim was to integrate research with clinical practice and community supports to improve understanding of the entire SCI population. The Rick Hansen Spinal Cord Injury Registry (RHSCIR) is an existing national registry which collects data on SCI patients from 30 sites in nine provinces across Canada, but was focused solely on traumatic spinal cord injuries. Dr. Ho and his team aimed to enhance the RHSCIR by adding the long-term tracking of persons with non-traumatic spinal cord injuries (a population that makes up 50% of cases of spinal cord injury but is not as well studied as those with traumatic incidents). The resulting Rick Hansen Alberta Spinal Cord Injury Registry (RHSCIR-AB) collects demographic and clinical data on all Alberta SCI patients and is accessible and used by SCI researchers, clinicians, national collaborators and healthcare administrators across the spectrum of care. The team has demonstrated many positive achievements as a result of this three-year grant.

This grant supported the development of a partnership with Spinal Cord Injury Alberta, a non-profit organization serving the needs of the SCI population in the community. This partnership enabled the development and implementation of a novel approach to the long-term follow-up of persons with SCI through the RHSCIR-AB. This integrated approach to long-term follow-up provides the capacity to address the concerns of the registry participants in real time by the appropriate support person/group. This is a much more proactive approach than previous models (which was entirely research-focused) and will ultimately improve people’s quality of life.

The team also pioneered the use of administrative health data to define, identify, and collect data on patients who have sustained a non-traumatic SCI (NTSCI). The algorithm they developed leverages Alberta Health Services data assets to identify NTSCI patients, which are a very heterogeneous group and therefore challenging to identify and track. This is an important development as this type of injury is increasing in prevalence due to the aging population. This groundbreaking work has significant implications in the care of these patients, and has led to a presentation at the International Spinal Cord Society conference in Vienna, Austria in 2016, and four published manuscripts. This could serve as an international method for defining and identifying NTSCI patients retrospectively.

As a result of Brain Canada’s generous funding, we have made significant achievements that would have not otherwise been realized. This grant has resulted in a great deal of foundational work that is driving the development and implementation of a model of care for SCI in Alberta."

 – Nicole McKenzie, Project Manager and Spinal Cord Injury, Research Facilitator at the Foothills Medical Centre