Condition or Therapy:
Spina bifida, myelomeningocele
What is the goal of this study?
We want to look at how we take care of babies with spina bifida. Spina bifida is a health problem that can happen when a baby’s spine does not develop normally before they are born. Babies born with spina bifida are at risk for bladder and kidney health problems.
We want to find the best way to care for children’s bladder and kidneys through the first five years of life. We want to learn how to have the kidneys be as healthy as possible as your child grows older. We are focusing on babies who have a type of spina bifida called myelomeningocele.
Who can join the study?
This study might be a good fit if your baby:
- Has been diagnosed with myelomeningocele
- Is newborn to 3 months
- Has gotten newborn inpatient care at Seattle Children's
To be in this study, the parent or legal guardian must speak English or Spanish. They must plan to get all bladder and kidney (urology) care at Seattle Children's for the next five years.
What happens in the study?
This is called an observational study. The study team would read your child's medical records during your child’s first five years. We will collect detailed information about your child's bladder and kidney health. We will note what treatments your child received.
If you choose to take part in the study, your baby would:
- Get the same care as babies who are not in the study
- Have no extra hospital visits, procedures, medicines or treatments
We may ask the parent or legal guardian:
- A few questions about your child at the time you start the study
- A few questions about your child’s health by telephone after your child’s visits to the kidney (urology) doctor at Seattle Children’s
Who can I contact for information or to enroll?
Email the research coordinator.
Seattle Children’s Hospital main campus
Dr. William O. Walker