Table 1.

Sample background characteristics (N = 179)

	N	%
Parent’s Sex
female	122	68
male	38	21
not reported	19	11
Parent’s Education
some high school or GED	8	5
high school diploma	22	12
some college	55	31
college degree	60	34
some post-graduate studies	2	1
post-graduate degree	27	15
not reported	5	3
Child’s Batten disease Diagnosis
CLN1 / Infantile Batten disease	25	14
CLN2 / Late Infantile Batten disease	47	26
CLN3 / Juvenile Batten disease	82	46
Other	7	4
Not reported	18	10