International SCI data network

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Spinal cord injury is complex. During the therapy, multiple of steps and interventions are required. Before any intervention becomes a standard procedure in the clinics, the efficacy needs to be shown. In order to do this, it is necessary to collate the details of numerous patients, this done in registries and databases.

Heads of major American, Canadian and European spinal cord injury (SCI) databases and funding organisations, including Wings for Life, met for a two-day workshop in Bethesda, USA, for a thorough discussion. The agenda included topics like the structure and the content of the datasets: What data are included in the existing registries - data on the acute phase of SCI, data on the longterm course, data on rehabilitation.  A comparison of the datasets revealed the differences as well as the overlap of the datasets.

Additional issues of the debate: how can the datasets of the different registries be used for scientific questions without jeopardizing data protection? What scientific questions can only be answered by a retrospective analysis using all the available data? What data are missing for important prospective studies?

This workshop was an important initial step towards an international network of databases that could be very important for future international multi-centre studies.