TY - JOUR
T1 - A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis
T2 - challenges and opportunities
AU - Beukelman, Timothy
AU - Anink, Janneke
AU - Berntson, Lillemor
AU - Duffy, Ciaran
AU - Ellis, Justine A
AU - Glerup, Mia
AU - Guzman, Jaime
AU - Horneff, Gerd
AU - Kearsley-Fleet, Lianne
AU - Klein, Ariane
AU - Klotsche, Jens
AU - Magnusson, Bo
AU - Minden, Kirsten
AU - Munro, Jane E
AU - Niewerth, Martina
AU - Nordal, Ellen
AU - Ruperto, Nicolino
AU - Santos, Maria Jose
AU - Schanberg, Laura E
AU - Thomson, Wendy
AU - van Suijlekom-Smit, Lisette
AU - Wulffraat, Nico
AU - Hyrich, Kimme
PY - 2017/4/19
Y1 - 2017/4/19
N2 - 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.
AB - 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.
KW - Juvenile idiopathic arthritis
KW - Registry
KW - Observational study
KW - Pharmacosurveillance
KW - Pediatric rheumatology
U2 - 10.1186/s12969-017-0161-5
DO - 10.1186/s12969-017-0161-5
M3 - Article
C2 - 28424093
SN - 1546-0096
VL - 15
JO - Pediatric Rheumatology
JF - Pediatric Rheumatology
IS - 1
M1 - 31
ER -