A Nordic Spinal Cord Injury registry (NordicSCIR) was established with support from the Nordic council of ministers in 2017. The aim of the registry is to improve care for individuals with Spinal Cord Injury (SCI), both traumatic and non-traumatic. NordicSCIR registers data and facilitates comparisons regarding injuries, treatment, and outcomes between patients, centers and countries.
NordicSCIR is based on the International SCI Data Sets. Registration is done electronically in the Medical Registry System (MRS). NordicSCIR includes all patients with SCI, hospitalized in one of the seven SCI units in Denmark, Norway, Iceland or in Linkoping, Sweden (included 2018). The other SCI units in Sweden are planned to be included in the future. Written informed consent is obtained. Information is sent through the Norwegian Health Network, providing efficient, secure electronic exchange of patient information. Data controller is St. Olav’s University Hospital, Trondheim, Norway. The MRS platform is adapted to multilingual use.
Please visit the NordicSCIR web site for more information and annual reports.
Annual Report 2021, a summary
The Norwegian Spinal Cord Injury Registry (NorSCIR) is a national medical quality registry for spinal cord injury (SCI) care. NorSCIR has been in operation since 2011 and was approved as a national medical quality registry by the Ministry of Health and Care Services in 2012.
NorSCIR aims to improve the quality of care, establish and monitor clinical guidelines, and serve as a resource for research by providing comprehensive data on SCI care. All SCI patients admitted for primary rehabilitation to one of the three specialized SCI departments and giving their consent are included. High data quality is considered to be one of the most essential elements of the registry. NorSCIR ensures high data quality through regular data assessments including the following dimensions: usefulness, validity, completeness, reliability, timeliness, and comparability.
Highlights from the annual report: 113 new cases were registered in NorSCIR in 2021. The coverage (completeness) of the registry was 93 %. In total, 1263 individuals have been registered with a spinal cord injury in NorSCIR since 2011. This annual report shows the results from ten quality indicators and Patients Reported Outcome Measures (PROM), patient characteristics, and other relevant analyses. In 2021, 31 % of all individuals with SCI were females. The distribution between traumatic and non-traumatic spinal cord injuries was 52 % / 48 %. The most common cause for traumatic SCI was falls, and for non-traumatic SCI degenerative etiology and vascular etiology. The average age of traumatic and non-traumatic SCI was 49 years and 57 years, respectively. The average length of stay in a specialized SCI unit was 86 days for persons with traumatic- and 55 days for persons with non-traumatic SCI.
In 2021 the Norwegian Spinal Cord Injury Registry started to collect EQ-5D-5L. The questionnaire has the first year in use a very good respondent rate. As many as 91 % of the newly injured patients completed the questionnaire at discharge from one of the SCI units. The registry is now able to present PROM-data from three different questionnaires. Two of them are specific developed for the Spinal Cord Injury population.
The Nordic council of ministers established a Nordic cooperation on highly specialized treatments in 2013. They launched several pilots to improve the Nordic collaboration. The Norwegian Directorate of Health requested NorSCIR to initiate a pilot project to establish a common Nordic SCI quality registry (NordicSCIR). Since 2017, NordicSCIR collects data and facilitates comparisons regarding injuries, treatments, and outcomes between patients, centers, and countries. Results from NordicSCIR are included in this annual report as well.