Table 1.
TAND Features in the Overall TOSCA Cohort (N = 2216)
| TAND Features | Individuals With Manifestation, n (%)a | Individuals With Available Data, n (%) | Individuals with Data Not Available*, n (%) |
|---|---|---|---|
| Behavioural level | |||
| Overactivity | 337 (45.0) | 749 (33.8) | 1467 (66.2) |
| Sleep difficulties | 331 (43.9) | 754 (34.0) | 1462 (66.0) |
| Impulsivity | 317 (42.7) | 742 (33.5) | 1474 (66.5) |
| Anxiety | 240 (33.3) | 720 (32.5) | 1496 (67.5) |
| Mood swings | 214 (29.8) | 718 (32.4) | 1498 (67.6) |
| Severe aggression | 183 (24.3) | 754 (34.0) | 1462 (66.0) |
| Depression mood | 139 (19.2) | 724 (32.7) | 1492 (67.3) |
| Self-injury | 117 (15.5) | 755 (34.1) | 1461 (65.9) |
| Obsessions | 100 (14.0) | 714 (32.2) | 1502 (67.8) |
| Psychosis | 40 (5.5) | 725 (32.7) | 1491 (67.3) |
| Hallucinations | 26 (3.6) | 719 (32.5) | 1497 (67.5) |
| Psychiatric level | |||
| ASD | 314 (21.1) | 1486 (67.1) | 730 (32.9) |
| ADHD | 268 (19.1) | 1404 (63.4) | 812 (36.6) |
| Anxiety disorder | 133 (9.7) | 1365 (61.6) | 851 (38.4) |
| Depressive disorder | 84 (6.1) | 1371 (61.9) | 845 (38.1) |
| Intellectual level | |||
| Normal | 393 (44.4) | 885 (39.9) | 1331 (60.1) |
| Mild ID | 249 (28.1) | 885 (39.9) | 1331 (60.1) |
| Moderate ID | 134 (15.1) | 885 (39.9) | 1331 (60.1) |
| Severe ID | 82 (9.3) | 885 (39.9) | 1331 (60.1) |
| Profound ID | 27 (3.1) | 885 (39.9) | 1331 (60.1) |
| Academic level | |||
| Individuals ever had difficulties in academic performance | 735 (58.6) | 1254 (56.6) | 962 (43.4) |
| Individuals assessed for academic difficulties | 359 (48.8)b | NA | NA |
| Neuropsychological level | |||
| Individuals ever had any neuropsychological skill assessed | 564 (41.6) | 1355 (61.1) | 861 (38.9) |
| Individuals with performance <5th percentile | 314 (55.7)c | NA | NA |
ASD autism spectrum disorder, ADHD attention deficit hyperactivity disorder, ID intellectual disability, IQ intelligence quotient, NA not applicable, TAND TSC-associated neuropsychiatric disorders
*Missing data includes unknown option ticked for TAND features in eCRF by patient/investigator
aPercentages calculated considering only available data and excluding missing data unless otherwise specified
bPercentages calculated based on the number of individuals with reported academic difficulties as denominator
cPercentages calculated based on the number of individuals who had neuropsychological skill assessed as denominator