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SUPPLEMENTARY MATERIAL Supplementary 1. International SUPPLEMENTARY MATERIAL Supplementary 1. International Myositis Classification Criteria Project Steering Committee Supplementary 2. Pilot study Supplementary 3. International Myositis Classification Criteria Project questionnaire Supplementary 4. Glossary and definitions for the International Myositis Classification Criteria Project questionnaire Supplementary 5. Adult comparator cases in the International Myositis Classification Criteria Project dataset Supplementary 6. Juvenile comparator cases in the International Myositis Classification Criteria Project dataset Supplementary 7. Validation cohort from the Euromyositis register Supplementary 8. Validation cohort from the Juvenile dermatomyositis cohort biomarker study and repository (UK and Ireland) 1 Supplementary 1. International Myositis Classification Criteria Project Steering Committee Name Affiliation Lars Alfredsson Institute for Environmental Medicine, Karolinska Institutet, Stockholm, Sweden Anthony A Amato Department of Neurology, Brigham and Women’s Hospital, Harvard Medical School, Boston, USA Richard J Barohn Department of Neurology, University of Kansas Medical Center, Kansas City, USA Matteo Bottai Institute for Environmental Medicine, Karolinska Institutet, Stockholm, Sweden Matthew H Liang Division of Rheumatology, Immunology and Allergy, Brigham and Women´s Hospital, Boston, USA Ingrid E Lundberg (Project Director) Rheumatology Unit, Department of Medicine, Karolinska University Hospital, Solna, Karolinska Institutet, Stockholm, Sweden Frederick W Miller Environmental Autoimmunity Group, Clinical Research Branch, National Institute of Environmental Health Sciences, National Institutes of Health, US Department of Health and Human Services, Bethesda, USA Clarissa Pilkington Department of Rheumatology, Great Ormond Street Hospital for Children NHS Trust, London, United Kingdom Lisa G Rider Environmental Autoimmunity Group, Clinical Research Branch, National Institute of Environmental Health Sciences, National Institutes of Health, US Department of Health and Human Services, Bethesda, USA Jasvinder A Singh University of Alabama and Birmingham VA Medical Center, Birmingham, USA & Mayo Clinic College of Medicine, Rochester, Minnesota, USA Marianne de Visser Department of Neurology, Academic Medical Centre, Amsterdam, Netherlands Victoria P Werth Department of Dermatology, Philadelphia VAMC and Hospital of the University of Pennsylvania, Philadelphia, USA Anna Tjärnlund (Project Coordinator) Rheumatology Unit, Department of Medicine, Karolinska University Hospital, Solna, Karolinska Institutet, Stockholm, Sweden 2 Supplementary 2. Pilot study IIM IIM Not IIM Not IIM Category Variable % (n) % (n) % (n) % (n) Sensitivity Specificity present missing present missing (%) (%) Weakness, Proximal UE 97 (33) 0 71 (10) 0 97 29 Clinical Wrist or FF weakness 56 (19) 6 (2) 2 (15) 1 (7) 56 79 Muscle Wrist/FF > shoulder abductors 18 (6) 9 (3) 7 (1) 14 (2) 18 79 Weakness, Proximal LE 97 (33) 0 50 (7) 0 97 50 Hip abductor weakness 88 (30) 6 (2) 43 (6) 7 (1) 88 50 Weakness distal LE 41 (14) 0 21 (3) 14 (2) 41 64 Knee extensors weaker than hip 18 (6) 6 (2) 7 (1) 14 (2) 18 79 Neck flexor weakness 85 (29) 0 43 (6) 0 85 57 Neck extensor weakness 21 (7) 21 (7) 7 (1) 21 (3) 21 71 Symmetric weakness 85 (29) 0 57 (8) 7 (1) 85 36 Muscle pain at rest 32 (11) 18 (6) 29 (4) 0 32 71 Muscle tenderness 35 (12) 9 (3) 7 (1) 7 (1) 35 86 Muscle atrophy distal forearms 18 (6) 3 (1) 0 0 18 100 Thigh atrophy 32 (11) 3 (1) 0 0 32 100 Heliotrope 38 (13) 0 0 0 38 100 Clinical 14 (2 Skin Gottron's papules 44 (15) 0 DM sine) 0 44 86 Rashes Erythema extensor surfaces 35 (12) 0 29 (4) 0 35 71 V-sign 21 (7) 0 7 (1) 0 21 93 Shawl sign 24 (8) 0 0 0 24 100 Calcification 9 (3) 3 (1) 0 0 9 100 Periungual erythema, petechiae, telangiectasis, cuticular overgrowth 41 (14) 0 7 (1) 0 41 93 Raynaud's 18 (6) 3 (1) 29 (4) 0 18 71 Family history AD 26 (9) 9 (3) 28 (4) 0 26 71 Clinical Acute onset 71 (24) 3 (1) 43 (6) 0 71 57 Other Arthritis 47 (16) 0 43 (6) 0 47 57 Polyarthralgias 44 (15) 0 50 (7) 0 44 50 Sjogren's syndrome 3 (1) 0 7 (1) 0 3 93 Systemic sclerosis 0 0 7 (1) 0 0 93 MCTD 0 0 0 0 0 0 Rheumatoid arthritis 0 3 (1) 43 (6) 0 0 57 SLE 3 (1) 0 29 (4) 0 3 71 Autoimmune thyroid disease 12 (4) 18 (6) 7 (1) 42 (6) 12 50 Objective improvement strength after corticosteroid therapy 79 (27) 6 (2) 43 (6) 43 (6) 79 14 No improvement strength after corticosteroid 3 (1) 35 (12) 14 (2) 43 (6) 3 43 Abbreviations: IIM=idiopathic inflammatory myopathies, UE=upper extremities, FF=finger flexors, LE=lower extremities, DM=dermatomyositis, AD=autoimmune disease, MCTD=mixed connective tissue disease, SLE=systemic lupus erythematosus 3 Supplementary 3. International Myositis Classification Criteria Project questionnaire Item Alternatives Have you received approval from your local IRB or □ Yes ethics committee for participation in this project? □ Exempt □ No Has your patient been diagnosed with the diagnosis □ Yes relevant for this study for more than 6 months? □ No (A yes is required, if No select a new case) Center (name of university or hospital from where data is entered) Clinician submitting case Case number Gender □ Female □ Male Age (years) at onset of first symptom assumed to be related to the disease Age (years) at diagnosis Age (years) at last evaluation Ethnicity □ Caucasian □ Of African descent □ Of Asian descent □ Of Native American descent □ Of Pacific Island descent □ Of Hispanic descent □ Of Mixed descent □ Unknown Study diagnosis according to the clinician submitting □ Idiopathic inflammatory myopathy (IIM) adults or the case children □ Not Idiopathic inflammatory myopathy (Not IIM) adults or children Study diagnosis: Idiopathic Inflammatory Myopathy □ Polymyositis (IIM) in adults or children □ Dermatomyositis □ Amyopathic dermatomyositis □ Hypomyopathic dermatomyositis □ Inclusion body myositis □ Immune-mediated necrotizing myopathy □ Juvenile dermatomyositis □ Juvenile polymyositis □ Other diagnosis, specify diagnosis below □ Not Idiopathic Inflammatory Myopathy (IIM) Not Idiopathic Inflammatory Myopathy (Not IIM), □ Becker´s dystrophy adults or children, but in which the diagnosis of □ Duchenne´s dystrophy idiopathic myositis was considered in the differential □ Fascioscapulohumeral dystrophy diagnosis □ Limb-girdle dystrophy □ Myotonic dystrophy □ Non-inflammatory inclusion body myopathy □ Other dystrophy, specify diagnosis □ Dysferlinopathy □ Acid maltase deficiency □ Allergies □ Bacterial myopathy □ Carnitine deficiency □ Celiac disease □ Crohn’s disease □ Cushing syndrome □ Cysticerosis □ Diabetes mellitus □ Drug or toxin associated myopathy, specify 4 diagnosis □ Exogenous steroid myopathy □ Familial periodic paralysis □ Fibromyalgia □ Filiarisis □ Glucocorticoid induced myopathy □ Gullain-Barre syndrome □ Hypercalcemia □ Hypereosinophilic syndrome □ Hypersensitivity conditions □ Hyperthyroidism □ Hypocalcemia □ Hypokalemia □ Hypothyroidism □ Immune mediated skin conditions, specify diagnosis below □ Juvenile idiopathic arthritis □ Kearns-Sayre syndrome □ Mc Ardle´s disease □ Metabolic myopathy, specify diagnosis □ Mitochondrial encephalomyopathy, lactic acidosis, stroke (MELAS) □ Mitochondrial myopathy, specify diagnosis □ Mixed connective tissue disease □ Motor neuron diseases, specify diagnosis □ Multiple sclerosis □ Myasthenia gravis □ Myoadenylate deaminase deficiency □ Myoclonic epilepsy, ragged red fibers (MERRF) □ Palmityltransferase deficiency □ Parasitic myopathy □ Phosphofructokinase deficiency □ Psoriasis □ Seborhheic dermatitis □ Statin induced myopathy □ Systemic lupus erythematosus (SLE) □ Systemic sclerosis □ Systemic vasculitis, specify diagnosis below □ Toxoplasmosis □ Trichinosis □ Trypanasoma □ Ulcerative colitis □ Verrucae vulgaris □ Viral myopathy □ Other dermatologic disease, specify diagnosis below □ Other endocrine myopathy, specify diagnosis □ Other infectious myopathy, specify diagnosis □ Other neuromuscular disease, specify diagnosis below □ Other systemic autoimmune disease, specify diagnosis below □ Other diagnosis, specify □ None applicable (Inflammatory Myopathy) Basis for study diagnosis (check all supporting □ Muscle weakness reasons) □ Muscle biopsy abnormalities □ Elevated muscle enzymes □ EMG abnormalities □ Rashes 5 □ Skin biopsy □ Autoantibodies □ MRI □ Other, please specify Other diagnoses in this case: (check all that apply) □ Non applicable □ Systemic sclerosis □ Sjögren´s syndrome □ Mixed connective tissue disease □ Rheumatoid arthritis □ Systemic lupus erythematosus □ Hypothyroidism □ Hyperthyroidism □ Type I diabetes □ Juvenile idiopathic arthritis □ Malignancy □ Other, please specify Clinical Muscle Variables – present at any time during the disease course 1M. Objective symmetric weakness, usually □ Present progressive, of the proximal upper extremities □ Absent □ Information not available □ Comments 2M, Objective shoulder abductor weakness □ Present □ Absent □ Information not available □ Comments 3M. Objective elbow flexor weakness □ Present □ Absent □ Information not available □ Comments 4M. Objective elbow extensor weakness □ Present □ Absent □ Information not available □ Comments 5M. Wrist and finger flexors are relatively weaker □ Present than shoulder abductors on the same side □ Absent □ Information not available □ Comments 6M. Wrist flexors are relatively weaker than wrist □ Present extensors on the same side □ Absent □ Information not available □ Comments 7M. Objective finger flexor weakness □ Present □ Absent □ Information not available □ Comments 8M. Objective
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