Variable Label (VAR)	Variable Name	Category	N(%)	N(Missing)	Mean(SD)	Median(Q1,Q3)	Range of Values	
A1. Blind_ID	BLIND_ID			383(0)	464.56(269.74)	455.00(220.00,701.00)	2.00-920.00	
								
Visit	VISIT	Eligibility event	383(100.0)					
								
B1. Was the patient randomized in the SVR Trial?	SVR_RANDOM	1:Yes	383(100.0)					
								
B1a. Did the patient receive a heart transplant?	TRANSPLANT	1:Yes	11(2.9)					
								
		2:No	372(97.1)					
								
B2. Is the patient alive?	PT_ALIVE	-8:Unknown	1(0.3)					
								
		1:Yes	370(96.6)					
								
		2:No	12(3.1)					
								
C1. Is the patient eligible for the SVR extension study?	PT_ELIGIBLE	1:Yes	370(96.6)					
								
		2:No	13(3.4)					
								
C2. Did the parent/legal guardian sign the Ext informed consent?	CONSENT	-2:Skipped	23(6.0)					
								
		1:Yes	317(82.8)					
								
		2:No	43(11.2)					
								
C2a. Patient age (years) at consent signing	PATIENT_AGE_CONSENT			317(66)	2.30(0.95)	2.23(1.34,2.99)	0.22-5.31	
								
C3. Reason for NOT signing informed consent form	NOCONSENT	-2:Skipped	340(88.8)					
								
		1:Family unwilling to particpate	33(8.6)					
								
		2:Pediatrician did not want pt to partic	1(0.3)					
								
		3:Lost to follow-up	8(2.1)					
								
		4:Other	1(0.3)					
								
C3a. If family unwilling to participate, specify primary reason	UNWILLING	-2:Skipped	350(91.4)					
								
		1:Because of time committment	17(4.4)					
								
		99:Other	16(4.2)					
								
C3ai. Specify other reason	UNWILLING_S							
								
Form version	VER_ID	A	383(100.0)