Development of a consensus core dataset in juvenile dermatomyositis for clinical use to inform research.

Annals of the Rheumatic Diseases
Liza J McCannMichael W Beresford

Abstract

This study aimed to develop consensus on an internationally agreed dataset for juvenile dermatomyositis (JDM), designed for clinical use, to enhance collaborative research and allow integration of data between centres. A prototype dataset was developed through a formal process that included analysing items within existing databases of patients with idiopathic inflammatory myopathies. This template was used to aid a structured multistage consensus process. Exploiting Delphi methodology, two web-based questionnaires were distributed to healthcare professionals caring for patients with JDM identified through email distribution lists of international paediatric rheumatology and myositis research groups. A separate questionnaire was sent to parents of children with JDM and patients with JDM, identified through established research networks and patient support groups. The results of these parallel processes informed a face-to-face nominal group consensus meeting of international myositis experts, tasked with defining the content of the dataset. This developed dataset was tested in routine clinical practice before review and finalisation. A dataset containing 123 items was formulated with an accompanying glossary. Demographic and diag...Continue Reading

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Citations

Aug 21, 2018·Current Opinion in Rheumatology·Giulia C VarnierLucy R Wedderburn
Apr 11, 2018·Current Rheumatology Reports·Silvia RosinaAngelo Ravelli
Apr 20, 2019·Frontiers in Immunology·Ann Marie ReedJeffrey Arthur Dvergsten
Nov 16, 2019·Arthritis Research & Therapy·Yvette MeissnerRebecca Fischer-Betz
Feb 12, 2019·Frontiers in Immunology·Romy E Hoeppli, Anne M Pesenacker
Apr 14, 2018·Nature Reviews. Rheumatology·Lisa G RiderNicolino Ruperto
Dec 15, 2020·Clinical Immunology : the Official Journal of the Clinical Immunology Society·Liza J McCann, Christian M Hedrich
Oct 16, 2020·Annals of the Rheumatic Diseases·Yvette MeissnerAnja Strangfeld
Mar 9, 2021·Current Rheumatology Reports·Gabriella GiancaneNicolino Ruperto

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Methods Mentioned

BETA
biopsy

Software Mentioned

STAndards
Delphi
SurveyMonkey
PRINTO

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