Table 2.

Genetic Counseling Experiences and Demographics

Topics	%
Parents received genetic counselinga	92
Timing of genetic counseling
After birth/before diagnosis	1
Coincident with diagnosis	22
After diagnosis	68
No counseling	8
Professional conducting genetic counseling
Geneticist	18
Genetic counselor	28
Neurologist	46
Nurse	1.5
Other	1.5
Geneticist + neurologist	1.5
Genetic counselor + neurologist	1.5
Genetic counselor + other	1.5
Perceived need for genetic counseling	89
Parents who pursued carrier testing	37
Parents who pursued carrier testing in nonsymptomatic children	16
Demographics of other relatives who received carrier testing
Siblings of parents	12
Otherb	12

^aAccording to the definition provided in the questionnaire.

^bIn-laws.