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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