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

Beukelman, Timothy (författare)
Univ Alabama Birmingham, 1600 7th Ave South,CPP 210, Birmingham, AL 35233 USA.;Univ Alabama Birmingham, Div Pediat Rheumatol, 1600 7th Ave South,CPP 210, Birmingham, AL 35233 USA.
Anink, Janneke (författare)
Erasmus MC, Rotterdam, Netherlands.
Berntson, Lillemor, 1957- (författare)
Uppsala universitet,Pediatrik,Uppsala Univ Hosp, Uppsala, Sweden.
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Duffy, Ciaran (författare)
Childrens Hosp Eastern Ontario, Ottawa, ON, Canada.
Ellis, Justine A. (författare)
Murdoch Childrens Res Inst, Genes Environm & Complex Dis, Parkville, Vic, Australia.
Glerup, Mia (författare)
Aarhus Univ Hosp, Aarhus, Denmark.
Guzman, Jaime (författare)
Univ British Columbia, Vancouver, BC, Canada.
Horneff, Gerd (författare)
Asklepios Klin Sankt Augsutin, St Augustin, Germany.
Kearsley-Fleet, Lianne (författare)
Univ Manchester, Manchester, Lancs, England.
Klein, Ariane (författare)
Asklepios Klin Sankt Augsutin, St Augustin, Germany.
Klotsche, Jens (författare)
German Rheumatism Res Ctr, Berlin, Germany.
Magnusson, Bo (författare)
Karolinska Univ Hosp, Stockholm, Sweden.
Minden, Kirsten (författare)
German Rheumatism Res Ctr, Berlin, Germany.
Munro, Jane E. (författare)
Royal Childrens Hosp, Melbourne, Vic, Australia.
Niewerth, Martina (författare)
German Rheumatism Res Ctr, Berlin, Germany.
Nordal, Ellen (författare)
Univ Hosp North Norway, Tromso, Norway.
Ruperto, Nicolino (författare)
Ist Giannina Gaslini, Genoa, Italy.
Santos, Maria Jose (författare)
Hosp Garcia de Orta, Almada, Portugal.
Schanberg, Laura E. (författare)
Duke Univ, Durham, NC 27706 USA.
Thomson, Wendy (författare)
Univ Manchester, Manchester, Lancs, England.
van Suijlekom-Smit, Lisette (författare)
Erasmus MC, Rotterdam, Netherlands.
Wulffraat, Nico (författare)
Univ Med Ctr Utrecht, Utrecht, Netherlands.
Hyrich, Kimme (författare)
Univ Manchester, Manchester, Lancs, England.;Cent Manchester Fdn Trust, Manchester, Lancs, England.
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Univ Alabama Birmingham, 1600 7th Ave South,CPP 210, Birmingham, AL 35233 USA;Univ Alabama Birmingham, Div Pediat Rheumatol, 1600 7th Ave South,CPP 210, Birmingham, AL 35233 USA. Erasmus MC, Rotterdam, Netherlands. (creator_code:org_t)
2017-04-19
2017
Engelska.
Ingår i: Pediatric Rheumatology. - : BIOMED CENTRAL LTD. - 1546-0096. ; 15
Relaterad länk:
https://doi.org/10.1...
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https://uu.diva-port... (primary) (Raw object)
https://ped-rheum.bi...
https://urn.kb.se/re...
https://doi.org/10.1...
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  • Tidskriftsartikel (refereegranskat)
Abstract Ämnesord
Stäng  
  • 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.

Nyckelord

Juvenile idiopathic arthritis
Registry
Observational study
Pharmacosurveillance
Pediatric rheumatology

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