{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,19]],"date-time":"2026-09-19T21:24:51Z","timestamp":1789853091411,"version":"4.0.1"},"reference-count":41,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2015,6,12]],"date-time":"2015-06-12T00:00:00Z","timestamp":1434067200000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Trials"],"published-print":{"date-parts":[[2015,12]]},"DOI":"10.1186\/s13063-015-0784-0","type":"journal-article","created":{"date-parts":[[2015,6,11]],"date-time":"2015-06-11T07:01:20Z","timestamp":1434006080000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":16,"title":["Development of an internationally agreed minimal dataset for juvenile dermatomyositis (JDM) for clinical and research use"],"prefix":"10.1186","volume":"16","author":[{"given":"Liza J.","family":"McCann","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jamie J.","family":"Kirkham","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lucy R.","family":"Wedderburn","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Clarissa","family":"Pilkington","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adam M.","family":"Huber","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angelo","family":"Ravelli","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Duncan","family":"Appelbe","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paula R.","family":"Williamson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael W.","family":"Beresford","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2015,6,12]]},"reference":[{"key":"784_CR1","first-page":"31","volume":"12","author":"LJ McCann","year":"2014","unstructured":"McCann LJ, Arnold K, Pilkington CA, Huber AM, Ravelli A, Beard L, et al. Developing a provisional, international Minimal Dataset for Juvenile Dermatomyositis: for use in clinical practice to inform research. Pediatr. Rheumatol. 2014;12:31.","journal-title":"Rheumatol."},{"key":"784_CR2","first-page":"603","volume":"30","author":"LG Rider","year":"2003","unstructured":"Rider LG, Giannini EH, Harris-Love M, Joe G, Isenberg D, Pilkington C, et al. Defining clinical improvement in adult and juvenile myositis. J Rheumatol. 2003;30:603\u201317.","journal-title":"J Rheumatol."},{"key":"784_CR3","doi-asserted-by":"publisher","first-page":"2281","DOI":"10.1002\/art.20349","volume":"50","author":"LG Rider","year":"2004","unstructured":"Rider LG, Giannini EH, Brunner HI, Ruperto N, James-Newton L, Reed AM, et al. International consensus on preliminary definitions of improvement in adult and juvenile myositis. Arthritis Rheum. 2004;50:2281\u201390.","journal-title":"Arthritis Rheum."},{"key":"784_CR4","unstructured":"International Myositis Assessment and Clinical Studies Group, IMACS. http:\/\/www.niehs.nih.gov\/research\/resources\/imacs"},{"key":"784_CR5","doi-asserted-by":"publisher","first-page":"4","DOI":"10.1002\/art.23248","volume":"59","author":"N Ruperto","year":"2008","unstructured":"Ruperto N, Ravelli A, Pistorio A, Ferriani V, Calvo I, Ganser G, et al. The provisional Paediatric Rheumatology International Trials Organisation\/American College of Rheumatology\/European League Against Rheumatism Disease activity core set for the evaluation of response to therapy in juvenile dermatomyositis: a prospective validation study. Arthritis Rheum. 2008;59:4\u201313.","journal-title":"Arthritis Rheum."},{"key":"784_CR6","doi-asserted-by":"publisher","first-page":"1533","DOI":"10.1002\/acr.20280","volume":"62","author":"N Ruperto","year":"2010","unstructured":"Ruperto N, Pistorio A, Ravelli A, Rider LG, Pilkington C, Oliveira S, et al. The Paediatric Rheumatology International Trials Organisation provisional criteria for the evaluation of response to therapy in juvenile dermatomyositis. Arthritis Care Res (Hoboken). 2010;62:1533\u201341.","journal-title":"Arthritis Care Res (Hoboken)."},{"key":"784_CR7","unstructured":"Paediatric Rheumatology INternational Trials Organisation, PRINTO. http:\/\/www.printo.it\/ ."},{"key":"784_CR8","doi-asserted-by":"publisher","first-page":"137","DOI":"10.1093\/rheumatology\/keq261","volume":"50","author":"N Martin","year":"2011","unstructured":"Martin N, Krol P, Smith S, Murray K, Pilkington CA, Davidson JE, et al. 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. Rheumatology (Oxford). 2011;50:137\u201345.","journal-title":"Rheumatology (Oxford)."},{"key":"784_CR9","unstructured":"Core Outcome Measures in Effectiveness Trials (COMET) Initiative database http:\/\/www.cometinitiative.org ."},{"key":"784_CR10","doi-asserted-by":"publisher","first-page":"279","DOI":"10.1186\/1745-6215-15-279","volume":"15","author":"E Gargon","year":"2014","unstructured":"Gargon E, Williamson PR, Altman DG, Blazeby JM, Clarke M. The COMET Initiative database: progress and activities from 2011\u20132013. Trials. 2014;15:279.","journal-title":"Trials."},{"key":"784_CR11","unstructured":"OMERACT (Outcome Measures in Rheumatology) collaboration. http:\/\/www.omeract.org\/ ."},{"issue":"7","key":"784_CR12","doi-asserted-by":"publisher","first-page":"745","DOI":"10.1016\/j.jclinepi.2013.11.013","volume":"67","author":"M Boers","year":"2013","unstructured":"Boers M, Kirwan JR, Wells G, Beaton D, Gossec L, d\u2019Agostino MA, et al. Developing Core Outcome Measurement Sets for clinical trials: OMERACT Filter 2.0. J Clin Epidemiol. 2013;67(7):745\u201353.","journal-title":"J Clin Epidemiol"},{"issue":"1","key":"784_CR13","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pmed.1000393","volume":"8","author":"IP Sinha","year":"2011","unstructured":"Sinha IP, Smyth RL, Williamson PR. Using the Delphi technique to determine which outcomes to measure in clinical trials: recommendations for the future based on a systematic review of existing studies. PLoS Med. 2011;8(1), e1000393.","journal-title":"PLoS Med"},{"issue":"7001","key":"784_CR14","doi-asserted-by":"publisher","first-page":"376","DOI":"10.1136\/bmj.311.7001.376","volume":"311","author":"J Jones","year":"1995","unstructured":"Jones J, Hunter D. Qualitative research: consensus methods for medical and health services research. BMJ. 1995;311(7001):376\u201380.","journal-title":"BMJ"},{"issue":"2","key":"784_CR15","doi-asserted-by":"publisher","first-page":"67","DOI":"10.1111\/j.2042-7174.1996.tb00844.x","volume":"4","author":"JA Cantrill","year":"1996","unstructured":"Cantrill JA, Sibbald B, Buetow S. The Delphi and nominal group techniques in health services research. Int J Pharm Pract. 1996;4(2):67\u201374.","journal-title":"Int J Pharm Pract"},{"issue":"Suppl 11","key":"784_CR16","doi-asserted-by":"publisher","first-page":"S118","DOI":"10.1002\/acr.20532","volume":"63","author":"LG Rider","year":"2011","unstructured":"Rider LG, Werth VP, Huber AM, Alexanderson H, Rao AP, Ruperto N, et al. Measures of adult and juvenile dermatomyositis, polymyositis, and inclusion body myositis: Physician and Patient\/Parent Global Activity, Manual Muscle Testing (MMT), Health Assessment Questionnaire (HAQ)\/Childhood Health Assessment Questionnaire (C-HAQ), Childhood Myositis Assessment Scale (CMAS), Myositis Disease Activity Assessment Tool (MDAAT), Disease Activity Score (DAS), Short Form 36 (SF-36), Child Health Questionnaire (CHQ), physician global damage, Myositis Damage Index (MDI), Quantitative Muscle Testing (QMT), Myositis Functional Index-2 (FI-2), Myositis Activities Profile (MAP), Inclusion Body Myositis Functional Rating Scale (IBMFRS), Cutaneous Dermatomyositis Disease Area and Severity Index (CDASI), Cutaneous Assessment Tool (CAT), Dermatomyositis Skin Severity Index (DSSI), Skindex, and Dermatology Life Quality Index (DLQI). Arthritis Care Res (Hoboken). 2011;63 Suppl 11:S118\u201357.","journal-title":"Arthritis Care Res (Hoboken)."},{"key":"784_CR17","unstructured":"Childhood Arthritis and Rheumatology Research Alliance, CARRA. www.carragroup.org ."},{"key":"784_CR18","unstructured":"Juvenile Dermatomyositis Research Group UK and Ireland, JDRG. http:\/\/www.juveniledermatomyositis.org.uk ."},{"key":"784_CR19","unstructured":"Paediatric Rheumatology European Society, PReS. http:\/\/www.pres.org.uk\/ ."},{"key":"784_CR20","volume-title":"Mail and internet surveys: the tailored design method","author":"DA Dillman","year":"2007","unstructured":"Dillman DA, Smythe JD, Christian LM. Mail and internet surveys: the tailored design method. 2nd ed. Hoboken, NJ: Wiley; 2007.","edition":"2"},{"issue":"4","key":"784_CR21","doi-asserted-by":"publisher","first-page":"395","DOI":"10.1016\/j.jclinepi.2010.09.012","volume":"64","author":"GH Guyatt","year":"2011","unstructured":"Guyatt GH, Oxman AD, Kunz R, Atkins D, Brozek J, Vist G, et al. GRADE guidelines: 2 Framing the question and deciding on important outcomes. J Clin Epidemiol. 2011;64(4):395\u2013400.","journal-title":"J Clin Epidemiol."},{"issue":"4","key":"784_CR22","doi-asserted-by":"publisher","first-page":"465","DOI":"10.1002\/acr.20035","volume":"62","author":"LG Rider","year":"2010","unstructured":"Rider LG, Koziol D, Giannini EH, Jain MS, Smith MR, Whitney-Mahoney K, et al. Validation of manual muscle testing and a subset of eight muscles (MMT8) for adult and juvenile idiopathic inflammatory myopathies. Arthritis Care Res. 2010;62(4):465\u201372.","journal-title":"Arthritis Care Res"},{"issue":"9","key":"784_CR23","doi-asserted-by":"publisher","first-page":"1953","DOI":"10.3899\/jrheum.090953","volume":"37","author":"E Stringer","year":"2010","unstructured":"Stringer E, Bohnsack J, Bowyer SL, Griffin TA, Huber AM, Lang B, et al. Treatment approaches to juvenile dermatomyositis (JDM) across North America: The Childhood Arthritis and Rheumatology Research Alliance (CARRA) JDM Treatment Survey. J Rheumatol. 2010;37(9):1953\u201361.","journal-title":"J Rheumatol"},{"key":"784_CR24","doi-asserted-by":"publisher","first-page":"990","DOI":"10.1093\/rheumatology\/kel025","volume":"45","author":"VE Brown","year":"2006","unstructured":"Brown VE, Pilkington CA, Feldman BM, Davidson JE, on behalf of the Network for Juvenile Dermatomyositis, a working party of the Paediatric Rheumatology European Society (PReS). An international consensus survey of the diagnostic criteria for juvenile dermatomyositis (JDM). Rheumatology. 2006;45:990\u20133.","journal-title":"Rheumatology."},{"issue":"9","key":"784_CR25","doi-asserted-by":"publisher","first-page":"1213","DOI":"10.1002\/acr.20507","volume":"63","author":"HI Brunner","year":"2011","unstructured":"Brunner HI, Mina R, Pilkington C, Beresford MW, Reiff A, Levy DM, et al. Preliminary criteria for global flares in childhood-onset systemic lupus erythematosus. Arthritis Care Res (Hoboken). 2011;63(9):1213\u201323.","journal-title":"Arthritis Care Res (Hoboken)"},{"issue":"5","key":"784_CR26","doi-asserted-by":"publisher","first-page":"453","DOI":"10.1177\/0961203310388445","volume":"20","author":"N Ruperto","year":"2011","unstructured":"Ruperto N, Hanrahan LM, Alarc\u00f3n GS, Belmont HM, Brey RL, Brunetta P, et al. International consensus for a definition of disease flare in lupus. Lupus. 2011;20(5):453\u201362.","journal-title":"Lupus"},{"key":"784_CR27","unstructured":"NIHR CRN: Children\/Arthritis Research UK Paediatric Rheumatology Clinical Studies Group. http:\/\/www.arthritisresearchuk.org\/research\/our-clinical-study-groups-and-research-strategies\/paediatric-rheumatology.aspx ."},{"key":"784_CR28","unstructured":"Myositis UK. http:\/\/www.myositis.org.uk\/ ."},{"key":"784_CR29","unstructured":"Cure JM Foundation. http:\/\/www.curejm.org\/ ."},{"issue":"4","key":"784_CR30","doi-asserted-by":"publisher","first-page":"461","DOI":"10.1016\/j.jval.2013.04.004","volume":"16","author":"LS Matza","year":"2013","unstructured":"Matza LS, Patrick DL, Riley AW, Alexander JJ, Rajmil L, Pleil AM, et al. Pediatric patient-reported outcome instruments for research to support medical product labeling: report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. Value Health. 2013;16(4):461\u201379.","journal-title":"Value Health"},{"key":"784_CR31","unstructured":"SMOG (simplified measure of gobbledygook) grading. http:\/\/www.niace.org.uk\/misc\/SMOG-calculator\/smogcalc.php ."},{"key":"784_CR32","unstructured":"The British Society for Paediatric and Adolescent Rheumatology (BSPAR). http:\/\/www.bspar.org.uk\/ ."},{"key":"784_CR33","unstructured":"National Institute for Health Research (NIHR) Clinical Research Network (CRN) Young Person\u2019s Advisory Group. http:\/\/www.crn.nihr.ac.uk\/children\/pcpie\/young-persons-advisory-group\/ ."},{"key":"784_CR34","doi-asserted-by":"publisher","first-page":"1452","DOI":"10.1093\/rheumatology\/keg403","volume":"42","author":"N Ruperto","year":"2003","unstructured":"Ruperto N, Ravelli A, Murray KJ, Lovell DJ, Andersson-Gare B, Feldman BM, et al. Preliminary core sets of measures for disease activity and damage assessment in juvenile systemic lupus erythematosus and juvenile dermatomyositis. Rheumatology. 2003;42:1452\u20139.","journal-title":"Rheumatology."},{"issue":"19","key":"784_CR35","first-page":"S163","volume":"2001","author":"J Nugent","year":"2001","unstructured":"Nugent J, Ruperto N, Grainger J, Machado C, Sawhney S, Baildam E, et al. The British version of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ). Clin Exp Rheumatol. 2001;2001(19):S163\u20137.","journal-title":"Clin Exp Rheumatol"},{"key":"784_CR36","doi-asserted-by":"publisher","first-page":"25","DOI":"10.1186\/1546-0096-11-S2-P25","volume":"11 Suppl 2","author":"GC Varnier","year":"2013","unstructured":"Varnier GC, Ferrari C, Consolaro A, Marafon D, Pilkington C, Maillard S, et al. Introducing a new approach to the care of juvenile dermatomyositis: the juvenile dermatomyositis multidimensional assessment report. Pediatr Rheumato. 2013;11 Suppl 2:25.","journal-title":"Pediatr Rheumato"},{"key":"784_CR37","doi-asserted-by":"crossref","unstructured":"Wulffraat NM, Vastert B, the SHARE consortium. Time to share. Pediatr Rheumatol. 2013;11(5) http:\/\/www.ped-rheum.com\/content\/11\/1\/5 .","DOI":"10.1186\/1546-0096-11-5"},{"key":"784_CR38","doi-asserted-by":"crossref","unstructured":"Murphy MK, Black NA, Lamping DL, McKee CM, Sanderson CF, Askham J, Marteau T. Consensus development methods, and their use in clinical guideline development: a review. Health Technology Assessment. 1998. 2 (3).","DOI":"10.3310\/hta2030"},{"key":"784_CR39","unstructured":"Euromyositis. http:\/\/Euromyositis.eu"},{"key":"784_CR40","doi-asserted-by":"publisher","first-page":"729","DOI":"10.1097\/01.bor.0000434667.55020.e1","volume":"25","author":"IE Lundberg","year":"2013","unstructured":"Lundberg IE, Svensson J. Registries in idiopathic inflammatory myopathies. Curr Opin Rheumatol. 2013;25:729\u201334.","journal-title":"Curr Opin Rheumatol."},{"key":"784_CR41","doi-asserted-by":"publisher","first-page":"967","DOI":"10.1016\/j.jval.2011.06.014","volume":"14","author":"DL Patrick","year":"2011","unstructured":"Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, et al. Content validity \u2013 establishing and reporting the evidence in newly developed Patient-Reported Outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force Report: Part 1 \u2013Eliciting concepts for a new PRO instrument. Value Health. 2011;14:967\u201377.","journal-title":"Value Health."}],"container-title":["Trials"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s13063-015-0784-0.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/article\/10.1186\/s13063-015-0784-0\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s13063-015-0784-0.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s13063-015-0784-0","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2019,8,26]],"date-time":"2019-08-26T13:36:03Z","timestamp":1566826563000},"score":1,"resource":{"primary":{"URL":"https:\/\/trialsjournal.biomedcentral.com\/articles\/10.1186\/s13063-015-0784-0"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2015,6,12]]},"references-count":41,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2015,12]]}},"alternative-id":["784"],"URL":"https:\/\/doi.org\/10.1186\/s13063-015-0784-0","relation":{},"ISSN":["1745-6215"],"issn-type":[{"value":"1745-6215","type":"electronic"}],"subject":[],"published":{"date-parts":[[2015,6,12]]},"assertion":[{"value":"19 February 2015","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"29 May 2015","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"12 June 2015","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}}],"article-number":"268"}}