Traumatic spinal cord injury (SCI) is associated with serious, long-term health consequences including death or permanent disability. Unfortunately, SCI is typically irreversible, and those who have experienced this kind of injury may require personal care and assistance in completing daily tasks. Because the complications associated with SCI are so devastating and typically require substantial support from healthcare systems, researchers are interested in compiling comprehensive, high-quality data on SCI.
To date, SCI has not been systematically evaluated in Austria, and patient care remains scattered across unconnected health centers, which can be inconsistent in their quality of care. A group of researchers at the Paracelsus Medical University in Salzburg, Austria propose the creation of a spinal cord patient registry, which would address relevant research questions, serve as a foundation for future clinical studies, and aim to improve patient care.
The researchers established the Austrian Spinal Cord Injury Study (ASCIS) and used simple assessment forms to collect patient data. Importantly, all patients diagnosed with traumatic SCI are eligible for inclusion in the database. To ensure that the registry is comprehensive, the researchers included data from hospitals, treatment centers, and rehabilitation clinics.
Currently, the data collected from the ASCIS registry has facilitated clinical research aimed to improve patient outcomes. The registry provides clinicians and researchers with data that may inform the creation of a national healthcare infrastructure for SCI treatment and support. National registries for traumatic brain and spinal cord injuries may be a critical step in consolidating and improving long-term patient care.
Aschauer-Wallner S, Mattiassich G, Aigner L, et al. The Austrian Spinal Cord Injury Study: a registry for patients living with a traumatic spinal cord injury. Spinal Cord Series and Cases. (October 2017).