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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