Table 3.

Ten most important research questions of ConnectEpeople survey respondents with children who have spina bifida (N=39).

Question	Really important/important, n (%)	Not sure, n (%)	Definitely not important, n (%)
How many children have surgery and how many survive?	37 (95)	2 (5)	0 (0)
What is the psychosocial impact of my child’s condition on my child and our family?	37 (95)	2 (5)	0 (0)
What is the normal milestone development for a child with the same condition as my child?	36 (92)	2 (5)	1 (3)
If my child has to take time out of school, will their education continue?	36 (92)	3 (8)	0 (0)
How can I maximize my child’s educational attainment?	36 (92)	3 (8)	0 (0)
What complementary therapies are beneficial for my child?	36 (92)	2 (5)	1 (3)
What dietary supplements should my child be taking?	35 (90)	3 (8)	1 (2)
What devices or products are the best to buy for my child at different life stages?	35 (90)	3 (8)	1 (2)
How many children, with the same condition as my child, go to mainstream school?	35 (90)	3 (8)	1 (2)
What type of operations are available for babies in the womb to reduce the effect of their condition?	34 (87)	4 (10)	1 (3)