A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis: challenges and opportunities

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Title: A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis: challenges and opportunities
Authors: 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 J
Schanberg, Laura E
Thomson, Wendy
van Suijlekom-Smit, Lisette
Wulffraat, Nico
Hyrich, Kimme
Date: 2017-04-19
Abstract: Abstract 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.
URL: http://dx.doi.org/10.1186/s12969-017-0161-5
http://hdl.handle.net/10393/36003
CollectionLibre accès - Publications // Open Access - Publications
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