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  • Beukelman, TimothyUniv 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. (author)

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

  • Article/chapterEnglish2017

Publisher, publication year, extent ...

  • 2017-04-19
  • BIOMED CENTRAL LTD,2017
  • electronicrdacarrier

Numbers

  • LIBRIS-ID:oai:DiVA.org:uu-324633
  • https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-324633URI
  • https://doi.org/10.1186/s12969-017-0161-5DOI

Supplementary language notes

  • Language:English
  • Summary in:English

Part of subdatabase

Classification

  • Subject category:ref swepub-contenttype
  • Subject category:art swepub-publicationtype

Notes

  • 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.

Subject headings and genre

  • Juvenile idiopathic arthritis
  • Registry
  • Observational study
  • Pharmacosurveillance
  • Pediatric rheumatology

Added entries (persons, corporate bodies, meetings, titles ...)

  • Anink, JannekeErasmus MC, Rotterdam, Netherlands. (author)
  • Berntson, Lillemor,1957-Uppsala universitet,Pediatrik,Uppsala Univ Hosp, Uppsala, Sweden.(Swepub:uu)liber604 (author)
  • Duffy, CiaranChildrens Hosp Eastern Ontario, Ottawa, ON, Canada. (author)
  • Ellis, Justine A.Murdoch Childrens Res Inst, Genes Environm & Complex Dis, Parkville, Vic, Australia. (author)
  • Glerup, MiaAarhus Univ Hosp, Aarhus, Denmark. (author)
  • Guzman, JaimeUniv British Columbia, Vancouver, BC, Canada. (author)
  • Horneff, GerdAsklepios Klin Sankt Augsutin, St Augustin, Germany. (author)
  • Kearsley-Fleet, LianneUniv Manchester, Manchester, Lancs, England. (author)
  • Klein, ArianeAsklepios Klin Sankt Augsutin, St Augustin, Germany. (author)
  • Klotsche, JensGerman Rheumatism Res Ctr, Berlin, Germany. (author)
  • Magnusson, BoKarolinska Univ Hosp, Stockholm, Sweden. (author)
  • Minden, KirstenGerman Rheumatism Res Ctr, Berlin, Germany. (author)
  • Munro, Jane E.Royal Childrens Hosp, Melbourne, Vic, Australia. (author)
  • Niewerth, MartinaGerman Rheumatism Res Ctr, Berlin, Germany. (author)
  • Nordal, EllenUniv Hosp North Norway, Tromso, Norway. (author)
  • Ruperto, NicolinoIst Giannina Gaslini, Genoa, Italy. (author)
  • Santos, Maria JoseHosp Garcia de Orta, Almada, Portugal. (author)
  • Schanberg, Laura E.Duke Univ, Durham, NC 27706 USA. (author)
  • Thomson, WendyUniv Manchester, Manchester, Lancs, England. (author)
  • van Suijlekom-Smit, LisetteErasmus MC, Rotterdam, Netherlands. (author)
  • Wulffraat, NicoUniv Med Ctr Utrecht, Utrecht, Netherlands. (author)
  • Hyrich, KimmeUniv Manchester, Manchester, Lancs, England.;Cent Manchester Fdn Trust, Manchester, Lancs, England. (author)
  • 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)

Related titles

  • In:Pediatric Rheumatology: BIOMED CENTRAL LTD151546-0096

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