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Table 1 Variables common to more than two datasets, considered for inclusion in provisional minimal dataset

From: Developing a provisional, international Minimal Dataset for Juvenile Dermatomyositis: for use in clinical practice to inform research

Variables common to four datasets (n = 19)

Variables common to three datasets (n = 16)

Variables common to two datasets (n = 24)

Date of birth and patient code

Patient name

Postcode

Gender

Patient centre

Death

Ethnicity

Diagnosis date

Fatigue due to JDM

Family history

JDM rash

Distribution of rash

Onset date

Skin erythema

Abdominal pain due to JDM

Height/Weight

MRI consistent with JDM at diagnosis

Neurological involvement

Symmetrical muscle weakness

CMAS

Weight loss due to JDM

Gottron’s or heliotrope rash

Gottron’s sign

Alopecia due to JDM

Skin ulcers

Shawl sign

Nail-fold changes

Dysphagia or dysphonia

Gastro-intestinal disease / ulceration due to JDM

Dysphagia

Calcinosis

Fever due to JDM

Dysphonia

Cardiac involvement

Abnormal pulmonary function tests

Respiratory symptoms

Arthritis

Contractures

Myalgia

Interstitial lung disease

Lipodystrophy

Eye disease (glaucoma/cataract)

MMT8

Autoantibody data (more than ANA)

Raynaud’s

Muscle enzymes elevated

Physician global assessment

Parental Visual Analogue Scale (VAS)

EMG changes consistent with JDM at diagnosis

 

Pain VAS

Muscle biopsy consistent with JDM

 

CHAQ

Medication history

 

MITAX/MYOACT

  

Hospitalisation since last visit

  

School absence

  

Other significant diagnosis

  

Sporting activities

  

Pubertal delay