Information about NordicSCIR in english

Background: A Nordic cooperation on highly specialized treatments was established by the Nordic council of ministers in 2013. Several pilot projects were launched with the aim of improving co-operation. The Norwegian SCI Registry (NorSCIR) was requested by the Norwegian Directorate of Health to initiate a pilot project, to establish a Nordic SCI quality registry (NordicSCIR).

NorSCIR was established in 2009 as a result of a collaboration between all three SCI units in Norway and the Spinal Cord Injuries Association (LARS). NorSCIR includes individuals with a spinal cord injury, both traumatic and non-traumatic, or with a Cauda Equina lesion.

The aim of the Nordic registry is to improve care for individuals with Spinal Cord Injury (SCI), both traumatic and non-traumatic. NordicSCIR registers data, facilitates comparisons regarding injuries, treatment, and outcomes between patients, centers and countries.

NordicSCIR includes all patients with SCI, hospitalized in one of the seven SCI units in Denmark, Norway, Iceland or in Linkoping, Sweden. The other SCI units in Sweden are planned to be included in near future. Currently Finland is not included.

Written informed consent:

Due to Norwegian law, written informed consent must be obtained before entering data into NordicSCIR. A license for processing personal health data in NordicSCIR is granted by the Norwegian Data Protection Authority.

IT Technical solution:

The registration is electronic, web based on Medical Registry System (MRS). The MRS platform is adapted to multilingual use. Information is sent through Norwegian Health Network, providing efficient, secure electronic exchange of patient information. Data controller is St. Olav’s University Hospital, Trondheim, Norway.

Variables:

The International Spinal Cord Injury Society (ISCoS) promotes the highest standard of care in the practice of SCI for men, women and children throughout the world. The international SCI Data Sets developed by ISCoS, are recommended and freely available for SCI registries. NordicSCIR is based on the International SCI Data Sets.

Results:

Annual reports are available under the heading “Rapporter”.

In the interview published in the Nordic Welfare Alliances - experiences of working together on sustainable Nordic welfare, you can read more about the establishment of NordicSCIR. See section “Doctors breaking down borders” from page 18: "Doctors breaking down borders"

A common SCI Medical Quality Registry for the Nordic Countries(PDF, 1.43 MB)
Establishment of a Nordic Spinal Cord Injury Registry(PDF, 1.42 MB)