Building a National Registry

Prior to 2004, very little was known about spinal cord injuries in Canada: their causes, prevalence, severity, or what factors affected how people improved (or didn’t improve) over time after injury. A registry—an organized system to create a centralized repository of information—which follows the progress of people with SCI over a period of time, has the potential to yield valuable information such as which interventions provide the best long-term outcomes for the patient. Unlike clinical trials, which normally involve a smaller sample of participants in an artificially standardized research environment, registries are often much larger with a more representative sample of people, and can give a better idea of what works in a real-world environment.

The Rick Hansen SCI Registry (RHSCIR) is an unprecedented, nationwide project that is collecting critical information on SCI at 31 major Canadian acute care and rehabilitation facilities across the country involving a national collaboration of 166 SCI researchers, health care providers and others. The RHSCIR Study began in 2004 and as of July 2013, it has enrolled over 3,600 participants nationwide.

RHSCIR is an invaluable resource for researchers and clinicians seeking to understand SCI and the effectiveness of specific treatments, practices or programs for improving functional outcomes and quality of life after SCI. RHSCIR supports the translational research done by RHI, and provides the larger community of Canadian researchers, health care professionals, and others with a powerful research and reporting tool.

RHSCIR has fostered fundamental changes in clinical care and research on SCI in Canada. It has helped to improve and standardize clinical care provided across Canada by promoting and training clinicians on how to conduct the International Standards for Neurological Classification of SCI. Health units and hospitals have examined trends in traumatic SCI patients admitted to their facilities over time, using this data to justify staffing requirements.

The network developed by the RHSCIR Study, and the standardized practice and measurement encouraged across sites, were essential in the development of RHI’s first multi-centre studies, CAMPER and Minocycline. Other RHI projects, such as Rehabilitation E-Scan and the SCI Community Survey, leverage the network for their own purposes (learn more about these projects here).

A national collaborative effort is currently underway to use the national RHSCIR data to undertake studies on SCI. Publication working groups are actively working with internal RHI staff in the development of these national RHSCIR publications, in both the acute and rehabilitation levels of care research topics. These studies are anticipated to result in papers which will be submitted for peer review with major scientific journals.