Canadian SCI Registry (RHSCIR)

How many people sustain a traumatic SCI each year? What was the cause of their injury and how severe was it? What treatments result in better outcomes?

Ideally, every researcher, clinician and healthcare administrator would have access to this type of information. Thanks to the vision of two individuals—Canadian icon and Paralympian Rick Hansen and renowned spine surgeon and researcher Dr. Marcel Dvorak—the concept of a national registry on SCI was born, with the establishment of the Rick Hansen SCI Registry (RHSCIR) in 2004.

Launched as a single site at Vancouver General Hospital, RHSCIR has since grown to include 30 major trauma and rehabilitation centres across Canada. It includes more than 13,000 participants making it the largest database that tracks the experiences of people living with SCI in Canada from the moment they sustain their injury and throughout their lifetime. With non-traumatic SCI representing roughly half of the SCI population in Canada, RHSCIR has expanded its data collection to include people with non-traumatic SCI, enabling researchers to obtain a more complete picture of SCI.

As a prospective observational study, this means that RHSCIR data is collected from participants without including any medical interventions or therapies. A standardized data set (such as demographics and information about the injury) is collected at all participating RHSCIR sites and aligns to international standards such as the ISNCSCI. Sites receive training to ensure high quality data is collected, which enables provincial, national and international data exchange to advance SCI research and care. All RHSCIR data is collected through Praxis’ secure, online data collection platform.