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Table 1 Demographic information of participants of the questionnaire for patients and care-givers

From: A questionnaire-based study to comprehensively assess the status quo of rare disease patients and care-givers in China

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)

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