NordicSCIR

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. The annual report shows the results from six quality indicators and Patients Reported Outcome Measures (PROM), patient characteristics, and other relevant analyses.

Highlights from the annual report for 2022

• In total, 1634 individuals have been registered with a spinal cord injury in NordicSCIR since 2017.

• 282 New cases were registered in NordicSCIR in 2022.

• The coverage (completeness) of the registry was 84 %.

• Results from the quality indicators shows that the participating hospitals largely follow the existing guidelines/best practice. However areas for quality improvement are as well identified, for example performed neurological classification at admission and discharge from a SCI unit.

• In 2022, 34 % of all individuals with SCI were females.

• The distribution between traumatic and non-traumatic spinal cord injuries was 45 % / 55 %.

• The most common cause for traumatic SCI was falls, and for non-traumatic SCI degenerative etiology. The average age of traumatic and non-traumatic SCI was 55 years and 59 years, respectively.

• The average length of stay in a specialized SCI unit was 100 days for persons with traumatic SCI, and 65 days for persons with non-traumatic SCI.

• Bowel and bladder function:
  1 out of 4 persons experience moderate to severe neurogenic bowel dysfunction.
  1 out of 3 persons experience incontinence for urine.

• Patients Reported Outcome Measures (PROM) data shows following mean score for Quality of Life at discharge (Scale ranging from 0 (completely dissatisfied) to 10 (completely satisfied):
  General quality of life 6,8
  Physical health 6,1
  Psychological health 7,3

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