Evidence map›Paper›PMID 20823094›Full record

ArticleRheumatology (Oxford, England)2011

A national registry for juvenile dermatomyositis and other paediatric idiopathic inflammatory myopathies: 10 years' experience; the Juvenile Dermatomyositis National (UK and Ireland) Cohort Biomarker Study and Repository for Idiopathic Inflammatory Myopathies.

Neil Martin, Petra Krol, Sally Smith, Kevin Murray, Clarissa A Pilkington, Joyce E Davidson, Lucy R Wedderburn, Juvenile Dermatomyositis Research Group

Erratum issuedAbstract read
In one paragraph

Article in Rheumatology (Oxford, England), 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 52 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
52citing papers in PubMed, 1 pooled it
–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

52 citing papers in PubMed, 1 synthesis or guideline pooled it.

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4 · The record

Corrections and comments

  • Erratum issued
5 · Who and what money

Authors and funding

8 authors.

Neil MartinRheumatology Unit, UCL Institute of Child Health, Great Ormond Street Hospital, 30 Guilford Street, University College London, London WC1N 1EH, UK.
Petra Krol
Sally Smith
Kevin Murray
Clarissa A Pilkington
Joyce E Davidson
Lucy R Wedderburn
Juvenile Dermatomyositis Research Group

Funding

Arthritis Research UK 14518Arthritis Research UK 18474Arthritis Research UK 18796Wellcome TrustWellcome Trust 085860
6 · The paper itself

Abstract

objectivesThe paediatric idiopathic inflammatory myopathies (IIMs) are a group of rare chronic inflammatory disorders of childhood, affecting muscle, skin and other organs. There is a severe lack of evidence base for current treatment protocols in juvenile myositis. The rarity of these conditions means that multicentre collaboration is vital to facilitate studies of pathogenesis, treatment and disease outcomes. We have established a national registry and repository for childhood IIM, which aims to improve knowledge, facilitate research and clinical trials, and ultimately to improve outcomes for these patients.

methodsA UK-wide network of centres and research group was established to contribute to the study. Standardized patient assessment, data collection forms and sample protocols were agreed. The Biobank includes collection of peripheral blood mononuclear cells, serum, genomic DNA and biopsy material. An independent steering committee was established to oversee the use of data/samples. Centre training was provided for patient assessment, data collection and entry.

resultsTen years after inception, the study has recruited 285 children, of which 258 have JDM or juvenile PM; 86% of the cases have contributed the biological samples. Serial sampling linked directly to the clinical database makes this a highly valuable resource. The study has been a platform for 20 sub-studies and attracted considerable funding support. Assessment of children with myositis in contributing centres has changed through participation in this study.

conclusionsThis establishment of a multicentre registry and Biobank has facilitated research and contributed to progress in the management of a complex group of rare muscloskeletal conditions.

Indexed as

Severity of Illness IndexBiomarkersChildChild, PreschoolCohort StudiesDermatomyositisDisease ProgressionFemaleHumansIrelandMaleMyositisRegistriesUnited KingdomBiomarkers

Identifiers

PMID20823094
PMCPMC2999955

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Registered trials

None linked

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.