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

Timothy Beukelman, Janneke Anink, Lillemor Berntson, Ciaran Duffy, Justine A. Ellis, Mia Glerup, Jaime Guzman, Gerd Horneff, Lianne Kearsley-Fleet, Ariane Klein, Jens Klotsche, Bo Magnusson, Kirsten Minden, Jane E. Munro, Martina Niewerth, Ellen Nordal, Nicolino Ruperto, Maria Jose Santos, Laura E. Schanberg, Wendy ThomsonLisette van Suijlekom Smit, Nico Wulffraat, Kimme Hyrich

Research output: Contribution to journalArticlepeer-review

Abstract

Background
To characterize the existing national and multinational
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 crosssectional
studies.
We captured information about study design, duration, location, inclusion
criteria, data elements and collection methods.
criteria, data elements and collection methods.
Results
We received survey results from 18 studies, including 11 national and 7 multinational
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 3variable
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 widerange 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.
Original languageEnglish
Article number31
JournalPediatric Rheumatology Online Journal
Volume15
DOIs
Publication statusPublished - 19 Apr 2017

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