Pediatric rheumatology online journal · 2017
A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis: challenges and opportunities.
СтатьяНазвание и аннотация: Перевод в очереди
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Beukelman Timothy, Anink Janneke, Berntson Lillemor, Duffy Ciaran, Ellis Justine A, Glerup Mia, Guzman Jaime, Horneff Gerd, Kearsley-Fleet Lianne, Klein Ariane, Klotsche Jens, Magnusson Bo, Minden Kirsten, Munro Jane E, Niewerth Martina, Nordal Ellen, Ruperto Nicolino, Santos Maria Jose, Schanberg Laura E, Thomson Wendy, van Suijlekom-Smit Lisette, Wulffraat Nico, Hyrich Kimme
Аннотация
BACKGROUND: To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration.
METHODS: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods.
RESULTS: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). 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.
CONCLUSION: There is a wide-range 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.
METHODS: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods.
RESULTS: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). 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.
CONCLUSION: There is a wide-range 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.