Evidence map›Paper›PMID 25075205›Full record

ArticlePediatric rheumatology online journal2014

Developing a provisional, international minimal dataset for Juvenile Dermatomyositis: for use in clinical practice to inform research.

Liza J McCann, Katie Arnold, Clarissa A Pilkington, Adam M Huber, Angelo Ravelli, Laura Beard, Michael W Beresford, Lucy R Wedderburn

Open access · goldAbstract readDataset
PubMed Full text at PMC Publisher
In one paragraph

Article in Pediatric rheumatology online journal, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed, 1 pooled it
0.9field-weighted citation impact, top 25% of its field
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

6 citing papers in PubMed, 1 synthesis or guideline pooled it, 11 citations in OpenAlex.

  1. The Minimum Data Set for Rare Diseases: Systematic Review.Journal of medical Internet research · 2023
    Pooled it
  2. Review
  3. Article
  4. Article
  5. Article
  6. Article
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

8 authors at 7 institutions in 3 countries.

Liza J McCannAlder Hey Children's NHS Foundation Trust, Eaton Road, Liverpool L12 2AP, UK.
Katie ArnoldRheumatology Unit, UCL Institute of Child Health, University College London, London, UK.
Clarissa A PilkingtonRheumatology Unit, UCL Institute of Child Health, University College London, London, UK ; Great Ormond Street Hospital, London, UK.
Adam M HuberIWK Health Centre and Dalhousie University, 5850 University Avenue, Halifax, NS B3K 6R8, Canada.
Angelo RavelliUniversità degli Studi di Genova and Istituto Giannina Gaslini, Largo G. Gaslini 5, 16147 Genoa, Italy.
Laura BeardRheumatology Unit, UCL Institute of Child Health, University College London, London, UK.
Michael W BeresfordAlder Hey Children's NHS Foundation Trust, Eaton Road, Liverpool L12 2AP, UK ; Department of Women's and Children's Health, Institute of Translational Medicine, University of Liverpool, Liverpool, UK.
Lucy R WedderburnRheumatology Unit, UCL Institute of Child Health, University College London, London, UK ; Centre for Adolescent Rheumatology at University College London, University College London Hospital, London, UK ; Great Ormond Street Hospital, London, UK.
University College London · GBAlder Hey Children's NHS Foundation Trust · GBDalhousie University · CAGreat Ormond Street Hospital · GBUniversity of Genoa · ITUniversity of Liverpool · GBUniversity of London · GB

Funding

Arthritis Research UK 20417
6 · The paper itself

Abstract

backgroundJuvenile dermatomyositis (JDM) is a rare but severe autoimmune inflammatory myositis of childhood. International collaboration is essential in order to undertake clinical trials, understand the disease and improve long-term outcome. The aim of this study was to propose from existing collaborative initiatives a preliminary minimal dataset for JDM. This will form the basis of the future development of an international consensus-approved minimum core dataset to be used both in clinical care and inform research, allowing integration of data between centres.

methodsA working group of internationally-representative JDM experts was formed to develop a provisional minimal dataset. Clinical and laboratory variables contained within current national and international collaborative databases of patients with idiopathic inflammatory myopathies were scrutinised. Judgements were informed by published literature and a more detailed analysis of the Juvenile Dermatomyositis Cohort Biomarker Study and Repository, UK and Ireland.

resultsA provisional minimal JDM dataset has been produced, with an associated glossary of definitions. The provisional minimal dataset will request information at time of patient diagnosis and during on-going prospective follow up. At time of patient diagnosis, information will be requested on patient demographics, diagnostic criteria and treatments given prior to diagnosis. During on-going prospective follow-up, variables will include the presence of active muscle or skin disease, major organ involvement or constitutional symptoms, investigations, treatment, physician global assessments and patient reported outcome measures.

conclusionsAn internationally agreed minimal dataset has the potential to significantly enhance collaboration, allow effective communication between groups, provide a minimal standard of care and enable analysis of the largest possible number of JDM patients to provide a greater understanding of this disease. This preliminary dataset can now be developed into a consensus-approved minimum core dataset and tested in a wider setting with the aim of achieving international agreement.

Indexed as

DermatomyositisDisease ManagementBiomarkersCanadaChildDisease ProgressionFemaleHumansInternational CooperationIrelandItalyMaleOutcome Assessment, Health CarePatient AcuityUnited KingdomBiomarkersCollaborationCore setDatasetDisease activityIdiopathic Inflammatory myopathyInternationalJuvenile dermatomyositis

Identifiers

PMID25075205
PMCPMC4113599
OpenAlexW2122893693

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

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.