Table 1

Key medical and physiotherapy information recorded on the database

Baseline information	Medical information at follow-up	Outcome measures at follow-up
Demographic data	Date of starting GCs	Ambulation status and mobility aids
Genetic mutation*	Current dose and regimen of GCs	Age at loss of independent ambulation
Maternal carrier status*	Adverse behavioural changes	Respiratory status (FVC, FVC%)
Date of diagnosis	Gastrointestinal symptoms	Echocardiogram (LVFS%)
Features of the muscle biopsy†	Increased appetite	NorthStar Ambulatory Assessment score
Family and social history	History of infections	Time rising from the floor from lying
	Height and weight	Timed 10 m run
	Blood pressure	Manual muscle testing
	Cushingoid features	Joint range
	Bone density measurements	Spinal posture
	Long bone fractures and vertebral fractures
	Cataracts
	Hirsutism
	Delayed puberty
	Other therapeutic interventions
	Adjustment in GC dose/regimen

*Genetic diagnosis and maternal carrier status confirmed by a state-of-the-art DNA diagnostic technique covering all Duchenne muscular dystrophy gene exons.
†Dystrophin expression observed on muscle biopsy by immunohistochemistry with monoclonal antibodies dys1, dys2, dys3 (ie, complete absence, traces).
FVC%, forced vital capacity percentage; GC, glucocorticoid corticosteroids; LVSF%, left ventricular shortening fraction percentage.