In April 2010, Queensland Premier Anna Bligh visited the Blusson Spinal Cord Centre and announced that the next Rick Hansen SCI Registry site would be located in Brisbane. The significance of this cannot be understated: with the announcement of her government’s $1 million funding for the new Brisbane site, Premier Bligh is making it possible for the Registry to officially move beyond Canadian borders and become a global entity.

The Registry, which is a Rick Hansen Institute core program, is allowing for the collection of critical SCI data. People who consent to having their information captured (and deidentified to protect privacy) after being injured will make it possible for researchers to see clear “cause and effect” trends of different treatments and approaches to care, from point of injury through rehabilitation and return to community.

Moving internationally will allow the Registry to share costs, capture more data, and explore differences in care and treatments between different countries.

Getting the Registry to this stage has often been a timeconsuming, multi-year process. For instance, here in Canada, we’ve had to comply with the very strict privacy standards that differ from province to province. But today, the Registry is clearly on a roll. Data sharing and funding agreements have been executed in almost all Canadian acute and rehab hospitals. Of 17 sites in Canada, 13 are actively enrolling participants, collecting data and submitting it to the national operations team at Blusson Spinal Cord Centre. Approximately 1,200 data sets have been collected, and we expect to grow on average by about 100 data sets per month.

Meanwhile, development of a new web-based data collection is moving along nicely, with beta testing underway.

The Registry will also be more than just a data repository. It will provide the operational support for several important research studies and clinical trials, including the upcoming minocycline multicentre trial for acute SCI treatment.

And, of course, there is the new international site in Brisbane. We hope this is the first of many sites with our Australian partners. Meanwhile, interest in the Registry is growing in other countries, including Israel, England and Switzerland. Perhaps some day we’ll have no choice but to change the name to the Rick Hansen Global SCI Registry.