Current Research Studies
Spina Bifida – National Spina Bifida Patient Registry
Condition or Therapy:
What is the goal of this study?
There are two main goals of this study. We want to:
- Learn what the best way is to care for children and adolescents with spina bifida
- Identify areas for future research about spina bifida
Who can join the study?
This study might be a good fit if your child is:
- Getting ongoing care at Seattle Children's for spina bifida or other neural tube defect
- Age newborn to 20 years
This study is available for English and Spanish speakers only at this time.
What will happen if my child takes part in this study?
If you choose to take part in the study, your child would come in for study visits where we would:
- Ask you and your child questions about your child's health. (Parents will answer questions for children under age 7.)
- Review your child's medical record each year to learn about medical care, surgeries and health issues your child has had.
- We might call you on the phone and ask you questions about your child's health after your child has seen their developmental pediatrician at Seattle Children's each year. If your child is 18 and older, they will speak with the researchers directly to answer questions. They may ask their parents for help if needed.