TABLE 1

Cohort Clinical and Demographic Characteristics

CharacteristicsNIMultiple CCC Single CCC
OverallTANo TATANo TATANo TA
n = 15 771n = 873n = 3495n = 152n = 911n = 838n = 9502
Age group, n (%)
 Newborna5262 (33.4)46 (5.3)716 (20.5)41 (27.0)558 (61.3)148 (17.7)3753 (39.5)
 Infancy (nonnewborn)2226 (14.1)52 (6.0)367 (10.5)30 (19.7)125 (13.7)68 (8.1)1584 (16.7)
 1–4 y2959 (18.8)198 (22.7)899 (25.7)44 (28.9)98 (10.8)232 (27.7)1488 (15.7)
 5–9 y2430 (15.4)263 (30.1)705 (20.2)25 (16.4)57 (6.3)207 (24.7)1173 (12.3)
 10–13 yb2212 (14.0)251 (28.8)643 (18.4)61 (6.7)148 (17.7)1098 (11.6)
 14–16 yb682 (4.3)63 (7.2)165 (4.7)12 (1.3)35 (4.2)406 (4.3)
Gender, female7030 (44.6)384 (44.0)1520 (43.5)74 (48.7)421 (46.2)346 (41.3)4285 (45.1)
Technology device, n (%)
 Gastrostomy737 (4.7)417 (47.8)72 (47.4)248 (29.6)
 Tracheostomyc162 (1.0)58 (6.6)87 (10.4)
 CSF shuntc359 (2.2)322 (36.9)36 (4.3)
 Evacuation tubes227 (1.4)53 (6.1)43 (28.3)131 (15.6)
 Renal support264 (1.7)32 (3.7)23 (15.1)209 (24.9)
 Cardiac support188 (1.1)17 (1.9)15 (9.9)156 (18.6)
 Other devicec,d30 (0.2)17 (1.9)10 (1.2)
  • CSF, cerebrospinal fluid.

  • a This includes 767 VLBW (<1000 g) newborns (4.9% of entire cohort).

  • b Eighteen children (11.4%) aged 10 to 16 y combined. Individual cell data not displayed because of small sample size to maintain confidentiality.

  • c Twenty-one (13.8%) with multiple CCCs with TA had a tracheostomy, CSF shunt, or other device. Individual cell data not displayed because of small sample size to maintain confidentiality.

  • d Other includes devices such as indwelling pumps (eg, baclofen pump).