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

• DOI: 10.1186/s12969-017-0161-5
• Publication Date: 2017-04-19T00:16:21Z
• Authors: Timothy Beukelman; Janneke Anink; Lillemor Berntson; Ciaran Duffy; Justine A. Ellis; Mia Glerup; Jaime Guzman; Gerd Horneff; Lianne Kearsley-F...; Ariane Klein; Jens Klotsche; Bo Magnusson; Kirsten Minden; Jane E. Munro; Martina Niewerth; Ellen Nordal; Nicolino Ruperto; Maria Jose Santos; Laura E. Schanberg; Wendy Thomson; Lisette van Suijl...; Nico Wulffraat; Kimme Hyrich
• Keywords: EMC MM-04-54-08-A; Medicin och hälsovetenskap; Registry; Pharmacosurveillance; Adolescent; VDP::Medisinske Fag: 700::Helsefag: 800::Epidemiologi medisinsk og odontologisk statistikk: 803; 610; Diseases of the musculoskeletal system; Medical and Health Sciences; Pediatrics; RJ1-570; Cohort Studies; 03 medical and health sciences; 0302 clinical medicine; VDP::Medisinske Fag: 700::Klinisk medisinske fag: 750::Pediatri: 760; Observational study; Journal Article; VDP::Medical disciplines: 700::Clinical medical disciplines: 750::Pediatrics: 760; Humans; Pediatric rheumatology; Registries; Child; Juvenile idiopathic arthritis; Observational study; Pediatric rheumatology; Pharmacosurveillance; Registry;; Australia; VDP::Medical disciplines: 700::Clinical medical disciplines: 750::Rheumatology: 759; Juvenile idiopathic arthritis; 001; Arthritis, Juvenile; 3. Good health; VDP::Medisinske Fag: 700::Klinisk medisinske fag: 750::Reumatologi: 759; Europe; Observational Studies as Topic; VDP::Medical disciplines: 700::Health sciences: 800::Epidemiology medical and dental statistics: 803; RC925-935; Research Design; Antirheumatic Agents; North America; Research Article

To characterize the existing national and multi-national registries cohort studies in juvenile idiopathic arthritis (JIA) identify differences as well areas of potential future collaboration. We surveyed investigators from North America, Europe, Australia about JIA registries. excluded cross-sectional studies. captured information study design, duration, location, inclusion criteria, data elements collection methods. received survey results 18 studies, including 11 7 representing 37 countries total. Study designs included inception cohorts, prevalent disease new treatment cohorts (several which contribute to pharmacosurveillance activities). Despite numerous differences, collected across was quite similar, with most collecting at least 5 6 American College Rheumatology core set variables needed calculate 3-variable clinical activity score. Most were medication initiation discontinuation dates attempting capture serious adverse events. There is a wide-range large, ongoing around world. Our indicate significant for collaborative work using different both combined comparative analyses.