About the Nordic JIA Study Group (NoSPeR)
NoSPeR is a study group currently working on Nordic population-based follow-up study on juvenile idiopathic arthritis (JIA).
The participating countries are Denmark, Finland, Norway, and Sweden.
The patients were enrolled between the years1997-2000.
The main targets of the study were to achieve more information about the epidemiology, outcome and disease characteristics of JIA.
At first the study was planned for 8 years’ period focusing mainly on disease activity and possible damages related to it. Later it was prolonged until 17-year follow-up, the results of which are currently being analyzed.
Clinical risk factors and biomarkers of JIA-associated uveitis have also been studied.
The study has already resulted in several publications in central international journals of rheumatology.
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This Nordic JIA study is prospective longitudinal JIA-study that began in the late 1990s. There were originally 500 children in the Nordic countries (Denmark, Finland, Norway, and Sweden) during the 3-year collection period, see the map for the areas in detail. The first published results concerned the incidence of arthritis in children, as well as the nature of the disease. The incidence of JIA in the Nordic countries was found to be similar to that in other Western countries.
In the eight year study we focused on the disease progression and prognosis. Chronic nature of the disease came up. 440 children (88%) had follow-up for more than 7 years (an average of 5 visits). Clinical data and disease activity were recorded during these monitoring visits according a specific protocol. 66% were girls, the median age at the beginning of the disease was 6 years and about half of the patients had a diagnosis of oligoarthritis at the 6-month-visit. Uveitis developed in the follow-up to 20% of these JIA patients.
Approximately half of the patients had ongoing medication after 8 years of the disease onset. On the other hand, almost half of the patients were in remission without medication.
Nearly one third of these children were still on regular medication, and 58% had used rheumatic drugs (DMARDs) at some point during the follow-up. One fifth of the patients had some JIA-related damage. 58% of patients were not in remission without mediaction at the final visit, of which 9% were in remission on medication, and 42% were in remission without medication. Most patients who were in remission, had remained in the oligoarthritis group or were those patients in systemic JIA – group of patients who had not developed a polyarticular disease.
The NoSPeR- follow-up study exposed the chronicity of JIA, when more than half of the children were not in remission without medication eight years after the disease onset.
The purpose of a 17-year follow-up study is to examine further the prognosis of the disease. The aims are to clarify the characteristics of the disease, intensely, as well as the medications and disease burden. The aim is to assess the damages of a permanent nature, related to the disease, and on the other hand, how many are in remission.
The NoSPeR study has produced the material for two dissertations, one by Dr. Lillemor Berntson, in Sweden (2003), and the other by Dr. Ellen Nordal in Norway (2011). There are also many other publications in international journals of rheumatology (see also the “Publications” sector). There have been numerous abstracts and presentations in the international rheumatology congresses for example PRES (the Pediatric Rheumatology European Society) and EULAR (the European League Against Rheumatism).