Registries and cohort studies around the world in juvenile idiopathic arthritis.

What is it about?

The aim of this work was to characterise the existing national and multinational registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration. We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods criteria, data elements and collection methods. We received survey results from 18 studies, including 11 national and 7 multinational studies representing 37 countries in total. Study designs included inception cohorts (looking at patients from JIA diagnosis onwards), prevalent disease cohorts, and new treatment cohorts (looking at safety and effectiveness of treatment). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3 variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events.

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Why is it important?

There is a widerange of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.

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