Data concerning patients with chronic inflammatory joint diseases such as rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis are registered in NorArthritis and the collection is based on informed consent from the patients.
The aim of the NorArthritis registry is to collect high quality data on patients with chronic inflammatory joint diseases in order to improve the quality of care among these patients.
Data on disease characteristics, treatment process at the different rheumatology departments, treatment efficacy, as well as potential side effects and complications, are collected. This knowledge is used to secure quality and equality in patient handling and eventually improve patient outcomes.
Registry approvals and management
In 2013, the NorArthritis was granted license from the Norwegian Data Protection Authority to administer the registry and handle the data. The same year, the NorArthritis was approved as a national quality registry by the Ministry of Health and Care Services.
The western health region (Helse Vest) is responsible for the data handling and the Department of Rheumatology, Haukeland University Hospital is in charge of operating the registry on a daily basis.
An advisory board consisting of rheumatologists from all health regions, relevant research groups, The Norwegian Society of Rheumatology, as well as a patient representative is responsible for strategic decisions such as guiding main activities, as well as for evaluating applications for registry data in research projects.
The members of the board are:
Clara Beate Gram Gjesdal, Chairman of the board, Western Norway health region
Liv Boge Amundsen, patient representative
Gunnstein Bakland, Northern Norway health region
Marianne Wallenius, Mid-Norway health region
Åse Stavland Lexberg, Southern and Eastern Norway health region
Elisabeth Lie, Southern and Eastern Norway health region
Erik Rødevand, representative from the Norwegian Society of Rheumatology
Bjørg-Tilde Svanes Fevang, head of registry
Guidelines for admission to data Vedtekter (PDF - in Norwegian)
Annual reportsAnnual report 2016 (PDF - in Norwegian)