The idea of a registry is not unique to SCI. The Canadian Cancer Registry, the National Rehabilitation Reporting System and the Canadian Trauma Registry all provide powerful examples of how a registry can focus research and improve the care related to a particular health issue.

Many people take for granted that the best evidence of the effectiveness of a particular treatment can be provided by a clinical trial. In some cases, this is no doubt true. However, an increasing number of experts believe that positive or adverse affects of various treatments or interventions can in many cases be better assessed by comprehensive cohort studies with high quality follow-up;the type of scrutiny that is possible within an empowered registry. At the same time, a registry allows researchers and clinicians to gain important statistical knowledge and discover best practices for diagnosis and determining outcomes and supports the management and staffing of hospital spinal cord injury programs.

Randomized clinical trials are expensive and lengthy, and they often exclude a participating institution from exploring other promising avenues. Sometimes there are tremendous variations in the performance of the procedure or in the techniques that are applied at different sites in a multi-centre clinical trial — particularly in surgical interventions. These variations can’t be controlled for in a randomized clinical trial.  An observational study, on the other hand, will give better information on the real world effectiveness of a specific procedure or technique.

When it comes to SCI in particular, there is general agreement today that differences in acute care approaches—for example, time to surgery and stabilization of an injury—seem to make a difference in long term outcomes. We believe there is no better way of assessing the benefits or adverse effects of different acute strategies than by using a registry.

The Rick Hansen SCI Registry brings the power of a registry concept to the field of spinal cord injury. Our goals are:

• Engaging all major Canadian spinal cord injury trauma centres and rehabilitation centres with the goal of collecting critical information from people with SCI.
• Ensuring that all Canadians who sustain an SCI are provided with the opportunity to make a contribution to important SCI research by participating in the registry.
• Analyzing, managing and sharing the collected data for the benefit of all participating researchers and institutions, and, ultimately, all people with SCI.
• Acting as a vital mechanism for connecting researchers, clinicians, health care professionals and people with SCI - striving for unprecedented collaboration.
• Serving as a data collection/sharing platform for emerging multi-centre clinical trials.
• Reaching out globally to like-minded partners and expanding the power of the registry through international collaboration.