Table 1 Sociodemographic and clinical characteristics (n = 184)
|  | All patients n = 184 |
|---|---|
Age in years1 | 9.8 ± 5.3 |
| Â | 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 |
| Â | range |
|  | 0–7.7 |
Age at TSC diagnosis in years1 | 1.3 ± 2.1 |
| Â | 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 | Â |
 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) |