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).
The Nordic Spinal Cord Injury Registry (NordicSCIR) is a nordic medical quality registry for spinal cord injury (SCI) care. 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 the Norwegian Spinal Cord Injury Registry (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. The registry collects structured data on incidence, medical treatment, rehabilitation, and follow-up of individuals with spinal cord injuries.
The purpose of the registry is to improve quality of spinal cord injury care and reduce undesirable variations in healthcare services and treatment. NordicSCIR is a consent-based register, which processes information pursuant to the General Data Protection Regulation (GDPR) article 6 no. 1 (a), article 9 no. 2 (a), and the consent from the registered persons.
All individuals with a newly acquired spinal cord injury (traumatic or non-traumatic) admitted for specialized rehabilitation at the following hospitals are invited to participate. Patients unable to provide informed consent due to cognitive or consciousness-related reasons, or those who decline participation are excluded from the registry.
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.
The technical solution, implemented in the Medical Registry System (MRS), supports multiple languages, including English, Danish, Icelandic, Swedish, and Norwegian. 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.
Initially, participating hospitals are located in Denmark, Iceland, and Norway, but the aim is to include hospitals in Finland and Sweden. Sweden’s spinal cord injury care has historically been decentralized, complicating the inclusion of all hospitals. However, a centralization decision in October 2021 assigned responsibility to four regions (Stockholm, Skåne, Västerbotten, and Västra Götaland) starting in 2023. The registry secretariat is in dialogue with Sweden’s Nationell högspecialiserad vård (NHV) working group to discuss the possibility for participation in NordicSCIR in these regions. Due to legal reasons, Finland is not included yet. However, Finnish healthcare professionals and colleagues have been involved in the project.
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