Alberta Participating in the National RH SCI Registry

Key Objective: Support the RHF in its efforts to gather detailed information about the health status and quality of life of Albertans living with SCI and to make these data available in a format that protects individual privacy and informs research.


A primary focus of the SCISN is the development of a research infrastructure. The Rick Hansen Spinal Cord Injury Registry (RHSCIR) is a fundamental component of this strategy that provides invaluable information by tracking, storing and relating data about clinical treatments provided to people with SCI. This information can be used by researchers and clinicians to better understand the impact and effectiveness of specific medical interventions over the course of an individual’s lifetime.

As the Registry grows, the data collected will help to establish and validate best practices that will ultimately provide better outcomes for individuals with SCI, help improve quality of life and lead to a cure for SCI in the future. The Registry currently has active sites in British Columbia, Alberta, Manitoba, Ontario, Quebec and Nova Scotia. Additional sites in Saskatchewan and Newfoundland are in the planning stages.

There is an Executive Scientific Committee which leads the project. Dr. John Hurlbert from the Foothills Hospital in Calgary is a member.

The RHSCIR currently has over 700 registered participants from across Canada. Data sharing agreements are in place in Alberta with the Foothills Medical Centre in Calgary (acute care and rehabilitation programs), the Glenrose Rehabilitation Hospital in Edmonton, the Royal Alexandra Hospital in Edmonton (acute care), and the University of Alberta Hospital in Edmonton (acute care). Due to issues with arranging funding, the project has been stalled in both Calgary and Edmonton since starting in 2005/2006; Calgary has enrolled 93 cases; Edmonton has enrolled 42 to date.

New coordinators have been appointed in both Calgary and Edmonton. A formal data sharing agreement was signed with Calgary and funding provided for two years. It is anticipated that data sharing and funding agreements will be signed in Edmonton in early 2009/2010.

Currently, the RHSCIR is registering individuals who suffer a traumatic spinal cord injury (SCI) and are admitted to a participating health care site in Canada. Information is only collected on those individuals who voluntarily give their informed consent. With agreements in place, data collection should be more consistent between acute care and rehabilitation. Communication between these two areas has improved and the national operations group is able to provide better support and direction. All of this should lead to increased enrolment in the project.

Future plans include sharing the data collected thus far with the national operations group so that a baseline can be created. A web-based platform is expected to be completed in 2010.

The RHSCIR contains:

• Patient Identification and Linking Data
• Demographic/Socio - Economic Data
• Diagnostic Data
• Procedural Data
• Treatment Data
• Outcome Data (i.e. quality of life)