Evidence map›Paper›PMID 28424093›Full record

ArticlePediatric rheumatology online journal2017

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 and 13 more

Abstract read
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In one paragraph

Article in Pediatric rheumatology online journal, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

11 citing papers in PubMed.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

23 authors.

Timothy BeukelmanUniversity of Alabama at Birmingham, Birmingham, USA. tbeukelman@peds.uab.edu.
Janneke AninkErasmus Medical Center, Rotterdam, The Netherlands.
Lillemor BerntsonUppsala University Hospital, Uppsala, Sweden.
Ciaran DuffyChildren's Hospital of Eastern Ontario, Ottawa, Canada.
Justine A EllisMurdoch Children's Research Institute, Genes, Environment & Complex Disease, Parkville, Australia.
Mia GlerupAarhus University Hospital, Aarhus, Denmark.
Jaime GuzmanUniversity of British Columbia, Vancouver, Canada.
Gerd HorneffAsklepios Klinik Sankt Augsutin, Sankt Augustin, Germany.
Lianne Kearsley-FleetUniversity of Manchester, Manchester, UK.
Ariane KleinAsklepios Klinik Sankt Augsutin, Sankt Augustin, Germany.
Jens KlotscheGerman Rheumatism Research Center, Berlin, Germany.
Bo MagnussonKarolinska University Hospital, Stockholm, Sweden.
Kirsten MindenGerman Rheumatism Research Center, Berlin, Germany.
Jane E MunroRoyal Children's Hospital, Melbourne, Australia.
Martina NiewerthGerman Rheumatism Research Center, Berlin, Germany.
Ellen NordalUniversity Hospital of North Norway, Tromso, Norway.
Nicolino RupertoIstituto Giannina Gaslini, Genoa, Italy.
Maria Jose SantosHospital Garcia de Orta, Almada, Portugal.
Laura E SchanbergDuke University, Durham, USA.
Wendy ThomsonUniversity of Manchester, Manchester, UK.
Lisette van Suijlekom-SmitErasmus Medical Center, Rotterdam, The Netherlands.
Nico WulffraatUniversity Medical Center Utrecht, Utrecht, The Netherlands.
Kimme HyrichUniversity of Manchester and Central Manchester Foundation Trust, Manchester, UK.

Funding

CARRA: Accelerating Toward an Evidence Based Culture in Pediatric RheumatologyRC2AR058934 · NIAMS · DUKE UNIVERSITY · PI ILOWITE, NORMAN T, SANDBORG, CHRISTY IRENE · 2009 to 2010
$6.8M
NIAMS NIH HHS RC2 AR058934
6 · The paper itself

Abstract

backgroundTo 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.

methodsWe 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.

resultsWe 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.

conclusionThere 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.

Indexed as

RegistriesAdolescentAntirheumatic AgentsArthritis, JuvenileAustraliaChildCohort StudiesEuropeHumansNorth AmericaObservational Studies as TopicResearch DesignAntirheumatic AgentsJuvenile idiopathic arthritisObservational studyPediatric rheumatologyPharmacosurveillanceRegistry

Identifiers

PMID28424093
PMCPMC5395903

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.