Table 1.

Demographic information of participants of the questionnaire for patients and care-givers

Relationship	Patients (n = 340, 17.4%)
	Care-givers (n = 1599, 81.6%)
Gender	Male (n = 575, 29.6%)
	Female (n = 1369, 70.4%)
Age	Respondents (33.9 ± 7.4 years)
	Patients (10.6 ± 12.6 years)
	Care-givers (34.4 ± 6.7 years)
Locations	Shandong (n = 164)
	Sichuan (n = 144)
	Hubei (n = 140)
	Henan (n = 134)
	Guangdong (n = 128)
	Hunan (n = 109)
	Beijing (n = 103)
	Other (n = 999)
Disease	CAH (n = 419)
	PKU (n = 246)
	Hemophilia (n = 243)
	Dravet (n = 153)
	DMD (158)
	Neurofibromatosis (n = 69)
	Pompe (n = 40)
	MPS (n = 71)
	AHC (n = 28)
	Addison' disease (n = 26)
	SCA (n = 38)
	Undiagnosed (n = 193)
	Other (n = 275)

Only provinces/districts with more than 100 participants were shown. Only diseases with more than 20 participants were shown. Mean ± standard deviations