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Table  5 Rate of the ten most common rare manifestations by age group

From: Rare manifestations and malignancies in tuberous sclerosis complex: findings from the TuberOus SClerosis registry to increAse disease awareness (TOSCA)

  Age, years
n (%)
 ≤ 2
(n = 10)
2– ≤ 5
(n = 16)
 > 5– ≤ 9
(n = 23)
 > 9– ≤ 14 (n = 49)  > 14– ≤ 18 (n = 18)  > 18– ≤ 40 (n = 168)  > 40
(n = 98)
Bone sclerotic foci 0 0 1 (4.3) 5 (10.2) 5 (27.8) 88 (52.4) 52 (53.1)
Scoliosis 1 (10) 2 (12.5) 8 (34.8) 24 (48.9) 6 (33.3) 37 (22.0) 10 (10.2)
Thyroid adenoma 0 0 0 1 (2.0) 1 (5.6) 8 (4.8) 11 (11.2)
Adrenal angiomyolipoma 0 0 4 (17.4) 2 (4.1) 0 8 (4.8) 3 (3.1)
pNET 0 0 1 (4.3) 3 (6.1) 0 7 (4.2) 1 (1.0)
Hemihypertrophy 3 (30) 1 (6.3) 1 (4.3) 1 (2.0) 2 (11.1) 3 (1.8) 1 (1.0)
Liver cysts 0 0 0 1 (2.0) 0 3 (1.8) 5 (5.1)
Spleen angiomyolipoma 0 2 (12.5) 0 2 (4.1) 0 2 (1.2) 3 (3.1)
Ovarian cysts 0 0 1 (4.3) 4 (8.2) 0 3 (1.8) 0
Lymphedema 1 (10) 0 0 2 (4.1) 1 (5.6) 1 (0.6) 2 (2.0)
Liver angiomyolipoma 0 0 0 1 (2.0) 0 3 (1.8) 2 (2.0)
  1. pNET, pancreatic neuroendocrine tumor