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. 2023 Sep 4;18:269. doi: 10.1186/s13023-023-02891-3

Table 1.

Demographic information for respondents and the affected child

Demographic variables Respondent (N = 19) Affected child (N = 15)
Gender

10/15 mother only (67%)

1/15 father only (7%)

4/15 both parents (27%)

4/15 female (27%)

11/15 male (73%)a

Average age (years) 34.0 ± 10.1 (34–72 years) 9.0 ± 6.4 (1–25 years)
Local origin 14 Caucasian, 3 Asian, 2 preferred not to respond 12 Caucasian, 2 Asian, 1 > 1 race
Ethnicity 1/19 Hispanic (5.2%) 1/15 Hispanic (7%)
Age at diagnosis n/a Mean: 6.2 ± 6.2 (birth to 25 years)

aThe skewed female/male ratio is noted, but the gender difference is not as striking in a larger cohort of individuals known to the authors