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Table 1 TAND Features in the Overall TOSCA Cohort (N = 2216)

From: TSC-associated neuropsychiatric disorders (TAND): findings from the TOSCA natural history study

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
  1. ASD autism spectrum disorder, ADHD attention deficit hyperactivity disorder, ID intellectual disability, IQ intelligence quotient, NA not applicable, TAND TSC-associated neuropsychiatric disorders
  2. *Missing data includes unknown option ticked for TAND features in eCRF by patient/investigator
  3. aPercentages calculated considering only available data and excluding missing data unless otherwise specified
  4. bPercentages calculated based on the number of individuals with reported academic difficulties as denominator
  5. cPercentages calculated based on the number of individuals who had neuropsychological skill assessed as denominator