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

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    Author
    Beukelman, T; Anink, J; Berntson, L; Duffy, C; Ellis, JA; Glerup, M; Guzman, J; Horneff, G; Kearsley-Fleet, L; Klein, A; ...
    Date
    2017-04-19
    Source Title
    Pediatric Rheumatology Online Journal
    Publisher
    Springer Science and Business Media LLC
    University of Melbourne Author/s
    Ellis, Justine; Munro, Jane
    Affiliation
    Paediatrics (RCH)
    Metadata
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    Document Type
    Journal Article
    Citations
    Beukelman, T., Anink, J., Berntson, L., Duffy, C., Ellis, J. A., Glerup, M., Guzman, J., Horneff, G., Kearsley-Fleet, L., Klein, A., Klotsche, J., Magnusson, B., Minden, K., Munro, J. E., Niewerth, M., Nordal, E., Ruperto, N., Santos, M. J., Schanberg, L. E. ,... Hyrich, K. (2017). A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis: challenges and opportunities.. Pediatr Rheumatol Online J, 15 (1), pp.31-. https://doi.org/10.1186/s12969-017-0161-5.
    Access Status
    Open Access
    URI
    http://hdl.handle.net/11343/257294
    DOI
    10.1186/s12969-017-0161-5
    Open Access at PMC
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5395903
    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.

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