Building the Rick Hansen Alberta Spinal Cord Injury Registry

Project Overview

There are an estimated 86,000 people living with a spinal cord injury (SCI) in Canada, with an annual economic burden of $2.67 billion for those surviving the initial injury. Approximately half of SCIs are the result of a traumatic (T) incident (ex. motor vehicle accident, sports injury) and the other half are from a non-traumatic (NT) cause (ex. infection or tumor pressing on the spine, or deterioration of the bones surrounding the spinal cord). Surviving SCI results in many costly and complex physical, emotional and social challenges for the person with SCI as well as their families and caregivers. Long-term tracking of these issues in the form of a registry may help us understand and treat them better. The Rick Hansen Institute (RHI) has been collecting information on people with a TSCI since 2005 in their national research registry.

With the support of the RHI team, as well as the Brain Canada Platform Support Grant, Dr. Ho and his team aimed to improve on the existing registry and include the long-term tracking of persons with NTSCI through these goals: 1) Design of a provincial SCI registry to include both TSCI and NTSCI patients. 2) Expansion of the information collected (ex. demographic, medical, health costs and resource use) to answer specific research questions. 3) Implementation of a new model for the long-term follow-up of SCI patients by shifting the collection and follow-up to our community partners, Spinal Cord Injury Alberta. The long-term medical information will soon be collected as part of the standard follow-up clinic visits. 4) Evaluation the challenges of someone caring for a person with an SCI. The information collected will highlight the needs for people with an SCI across their lifetime, as well as the funding and resources required to support them.

Partners and Donors

Alberta Paraplegic Foundation

Hotchkiss Brain Institute - University of Calgary

University of Alberta