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Table 1 Sociodemographic and clinical characteristics (n = 184)

From: Direct and indirect costs and cost-driving factors of Tuberous sclerosis complex in children, adolescents, and caregivers: a multicenter cohort study

  All patients n = 184
Age in years1 9.8 ± 5.3
  range
  0.7–21.8
Sex % (n)
 Male 51.6 (95)
 Female 48.4 (89)
Age at first symptoms due to TSC1 0.8 ± 1.3
  range
  0–7.7
Age at TSC diagnosis in years1 1.3 ± 2.1
  range
  0–12.1
TSC diagnosis before birth by ultrasound % (n)
 No 81.5 (150)
 Yes 18.5 (34)
Genetics % (n)
 TSC1-gene 13.6 (25)
 TSC2-gene 46.2 (85)
 TSC2/PKD1 contiguous-gene 2.7 (5)
 No genetic test 15.2 (28)
 No genetic mutation 4.9 (9)
 Unknown 17.3 (32)
Affected family members by TSC % (n)
 No 85.3 (157)
 Yes 14.7 (27)
  Mother affected (23.9 years)2 7.6 (14)
  Father affected (33.6 years)2 6.5 (12)
  Sibling affected (8.8 years)2 4.9 (9)
  Grandparents affected 2.2 (4)
Parents' age in years1  
 Mother 40.8 ± 7.0
 Father 43.4 ± 7.4
Living conditions % (n)
 With mother and father 82.1 (151)
 Only with mother 13.0 (24)
 Only with father 0.5 (1)
 Other 4.4 (8)
Childcare and School % (n)
 School for children with special needs3 40.2 (74)
 Kindergarten 26.6 (49)
 Primary mainstream school 10.9 (20)
 Secondary mainstream school 8.2 (15)
 Only at home 6.0 (11)
 Day care 0.5 (1)
 Employed 0.5 (1)
 Unknown/other 7.1 (13)
  1. 1Mean ± standard deviation
  2. 2Mean age at TSC diagnosis of affected family members
  3. 3Learning, mental and physical development