dc.contributor.author | Beukelman, Timothy | |
dc.contributor.author | Anink, Janneke | |
dc.contributor.author | Berntson, Lillemor | |
dc.contributor.author | Duffy, Ciaran | |
dc.contributor.author | Ellis, Justine A. | |
dc.contributor.author | Glerup, Mia | |
dc.contributor.author | Guzman, Jaime | |
dc.contributor.author | Horneff, Gerd | |
dc.contributor.author | Kearsley-Fleet, Lianne | |
dc.contributor.author | Klein, Ariane | |
dc.contributor.author | Klotsche, Jens | |
dc.contributor.author | Magnusson, Bo | |
dc.contributor.author | Minden, Kirsten | |
dc.contributor.author | Munro, Jane E. | |
dc.contributor.author | Niewerth, Martina | |
dc.contributor.author | Nordal, Ellen Berit | |
dc.contributor.author | Ruperto, Nicolino | |
dc.contributor.author | Santos, Maria José | |
dc.contributor.author | Schanberg, Laura E. | |
dc.contributor.author | Thomson, Wendy | |
dc.contributor.author | Suijlekom-Smit, Lisette van | |
dc.contributor.author | Wulffraat, Nico | |
dc.contributor.author | Hyrich, Kimme | |
dc.date.accessioned | 2018-05-16T12:27:17Z | |
dc.date.available | 2018-05-16T12:27:17Z | |
dc.date.issued | 2017-04-19 | |
dc.description.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.
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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.
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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.
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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. | en_US |
dc.description.sponsorship | This work was supported in part by the Arthritis Research UK Centre for Epidemiology (Grant #20380). | en_US |
dc.description | Source at <a href=https://doi.org/10.1186/s12969-017-0161-5>https://doi.org/10.1186/s12969-017-0161-5</a>. | en_US |
dc.identifier.citation | Beukelman, T., Anink, J., Berntson, L., Duffy, C., Ellis, J. A., Glerup, M., . . . Hyrich, K. (2017). A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis: challenges and opportunities. Pediatric Rheumatol Online Journal, 15(1), 31. https://doi.org/10.1186/s12969-017-0161-5 | en_US |
dc.identifier.cristinID | FRIDAID 1532558 | |
dc.identifier.doi | 10.1186/s12969-017-0161-5 | |
dc.identifier.issn | 1546-0096 | |
dc.identifier.uri | https://hdl.handle.net/10037/12724 | |
dc.language.iso | eng | en_US |
dc.publisher | BioMed Central | en_US |
dc.relation.journal | Pediatric Rheumatology | |
dc.rights.accessRights | openAccess | en_US |
dc.subject | VDP::Medisinske Fag: 700::Klinisk medisinske fag: 750::Pediatri: 760 | en_US |
dc.subject | VDP::Medical disciplines: 700::Clinical medical disciplines: 750::Pediatrics: 760 | en_US |
dc.subject | VDP::Medisinske Fag: 700::Klinisk medisinske fag: 750::Reumatologi: 759 | en_US |
dc.subject | VDP::Medical disciplines: 700::Clinical medical disciplines: 750::Rheumatology: 759 | en_US |
dc.subject | VDP::Medisinske Fag: 700::Helsefag: 800::Epidemiologi medisinsk og odontologisk statistikk: 803 | en_US |
dc.subject | VDP::Medical disciplines: 700::Health sciences: 800::Epidemiology medical and dental statistics: 803 | en_US |
dc.subject | Juvenile idiopathic arthritis | en_US |
dc.subject | Registry | en_US |
dc.subject | Observational study | en_US |
dc.subject | Pediatric rheumatology | en_US |
dc.subject | Pharmacosurveillance | en_US |
dc.title | A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis: challenges and opportunities | en_US |
dc.type | Journal article | en_US |
dc.type | Tidsskriftartikkel | en_US |
dc.type | Peer reviewed | en_US |