Table 5

Summary of items included in the JDM optimal dataset, form C (completed at baseline visit and then annual visits only)

Section headingItemsAdditional items conditional on previous response (summary)
Muscular damage items1Muscle atrophy (clinical)
2Muscle weakness not attributable to active muscle disease
3Muscle dysfunction: decrease in aerobic exercise capacity
4VAS for global muscle disease damageMark score on 10 cm line*
Skeletal damage items5Joint contractures (due to myositis)
6Osteoporosis with fracture or vertebral collapse (excluding avascular necrosis)
7Avascular necrosis
8Deforming arthropathy
9VAS for global skeletal disease damageMark score on 10 cm line*
Cutaneous damage items10Calcinosis (persistent)
11Alopecia (scarring)
12Cutaneous scarring or atrophy (depressed scar or cutaneous atrophy)
13Poikiloderma
14Lipoatrophy/lipodystrophy
15VAS for global cutaneous disease damageMark score on 10 cm line*
Gastrointestinal damage items16Dysphagia (persistent)
17Gastrointestinal dysmotility, constipation, diarrhoea or abdominal pain (persistent)
18Infarction or resection of bowel or other gastrointestinal organs
19VAS for global gastrointestinal disease damageMark score on 10 cm line*
Pulmonary damage items20Dysphonia (persistent)
21Impaired lung function due to respiratory muscle damage
22Pulmonary fibrosis
23Pulmonary hypertension
24VAS for global pulmonary disease damageMark score on 10 cm line*
Cardiovascular damage items25Hypertension requiring treatment for >6 months
26Ventricular dysfunction or cardiomyopathy
27Assessed in adults (>18 years of age) only: angina or coronary artery bypass
28Assessed in adults (>18 years of age) only: myocardial infarction
29VAS for global cardiovascular damageMark score on 10 cm line*
Peripheral vascular damage items30Tissue or pulp loss
31Digit loss or limb loss or resection
32Venous or arterial thrombosis with swelling, ulceration or venous stasis
33Assessed in adults (>18 years of age) only: claudication
34VAS for global peripheral vascular disease damageMark score on 10 cm line*
Pubertal status of patient35Pubertal assessment completed by physician or by patient (self-assessment)Tanner score (1–5)
Endocrine damage items36Growth failure
37Delay in development of secondary sexual characteristics (>2 SD beyond mean for age)
38Hirsutism or hypertrichosis
39Irregular menses
40Primary or secondary amenorrhoea
41Diabetes mellitus
42In adults (>18 years of age): infertility—male or female
43In adults (>18 years of age): sexual dysfunction
44VAS for global endocrine disease damageMark score on 10 cm line*
Ocular damage items45Cataract resulting in visual loss
46Visual loss, other, not secondary to cataract
47VAS for global ocular disease damageMark score on 10 cm line*
Infection damage items48Chronic infection
49Multiple infections
50VAS for global infection damageMark score on 10 cm line*
Malignancy51Presence of malignancy
52VAS for malignancy (complications)Mark score on 10 cm line*
Other damage53DeathInclude cause and date of death
54VAS for any other damageMark score on 10 cm line* and add details of other damage
Global disease assessment damage55Physician VAS of global disease damageMark score on 10 cm line*
  • *0 is inactive or lowest score and 10 is most active or highest score on 10 cm VAS scores.

  • JDM, juvenile dermatomyositis; VAS, Visual Analogue Scale.