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Table 3 TSC-Associated Neuropsychiatric Disorders (TAND) features reported in TOSCA at baseline

From: TuberOus SClerosis registry to increase disease Awareness (TOSCA) – baseline data on 2093 patients

TAND features Patients with manifestation, n/patients with available data (%) Patients with available data, n/2093 (%) Missing data, n/2093 (%)
Behavioral difficulties
 Overactivity 317 (20.7) 1533 (73.2) 560 (26.8)
 Sleep difficulties 301 (19.5) 1540 (73.6) 553 (26.4)
 Impulsivity 297 (19.4) 1533 (73.2) 560 (26.8)
 Anxiety 205 (13.7) 1498 (71.6) 595 (28.4)
 Mood swings 201 (13.4) 1499 (71.6) 594 (28.4)
 Severe aggression 168 (10.8) 1559 (74.5) 534 (25.5)
 Depression mood 124 (8.3) 1500 (71.7) 593 (28.3)
 Self-injury 106 (6.8) 1555 (74.3) 538 (25.7)
 Obsession 92 (6.1) 1505 (71.9) 588 (28.1)
 Psychosis 34 (2.3) 1514 (72.3) 579 (27.7)
 Hallucination 23 (1.5) 1512 (72.2) 581 (27.8)
Psychiatric disorders
 ASD 291 (20.7) 1406 (67.1) 687 (32.8)
 ADHD 260 (19.6) 1329 (63.4) 764 (36.5)
 Anxiety 118 (9.1) 1294 (61.8) 799 (38.2)
 Depression 80 (6.1) 1301 (62.1) 792 (37.8)
Intellectual Abilitya
 Normal 371 (45.1) NA NA
 Mild ID 232 (28.2) NA NA
 Moderate ID 123 (15.0) NA NA
 Severe ID 75 (9.1) NA NA
 Profound ID 21 (2.6) NA NA
Academic difficulties
 Patients ever had difficulties in academic performance 682 (57.8) 1179 (56.3) 914 (43.7)
 Patients assessed for academic difficulties 332 (48.6% of those with reported difficulties) 332 (15.9) NA
Neuropsychological difficulties
 Patients ever had any neuropsychological skill assessed 510 (40.1) 1270 (60.6) 823 (39.3)
 Patients with performance < 5th percentile 281 (55% of those who had neuropsychological assessment) 281 (13.4) NA
  1. ASD autism spectrum disorder, ADHD attention deficit hyperactivity disorder, NA not applicable, TOSCA TuberOus SClerosis registry to increase disease Awareness, TAND TSC-associated neuropsychiatric disorders, ID Intellectual Disability
  2. aPatients with intellectual ability measured by intellectual quotient were available in 822 (39.3%) out of 834 patients. Intelligent ability was not measured in 752 (35.9%) patients