Table 1.

Structure of the Case Report Form and registry items

Basic information	Date
	Hospital
	ID of hospital
	Name
	Date of birth
	Sex
	Address
	Phone
	E-mail
	Nationality
	Signed up for other registries?
	Attending any clinical trials?
Family history	Family history
	Consanguinity
Diagnosis	Muscle biopsy
	Genetic analysis* facility ( )
	Complications
Patient status	Body weight and height
	Age and symptoms at onset
	Walking capability and wheelchair use
	Grip power
	Respiratory function (VC,%VC, FVC,%FVC, mechanical support)
	Cardiac functions (EF, ES)
	Creatine kinase level

Gray cells are for patients to fill out, and white cells are to be filled out by physicians.

VC: vital capacity, FVC: forced vital capacity, EF: ejection fraction, FS: fraction shortening.