Spina Bifida
Our researchers are investigating the benefits of prenatal counseling for pregnant mothers having a fetus with neural tube defects.
Bowel and bladder continence is a primary issue that affects the day-to-day quality of life for spina bifida patients and their families. Researchers at the Center for Child Health, Behavior and Development are conducting ongoing studies to evaluate the effectiveness of medical and surgical interventions to attain bowel and bladder continence and evaluate patient and parent satisfaction with quality of life after these interventions.
Spina bifida affects multiple body systems and structures, making it an ideal candidate for the multidisciplinary approach that guides our center's research. Much of our work is informed by 50 years of longitudinal data about spina bifida, collected with the Patient Data Management System (PDMS) computerized database.
One of our current projects seeks to evaluate and manage the care of children with cerebrospinal fluid (CSF) shunts (a CSF shunt removes excess fluid that would otherwise accumulate around a child’s brain). Areas of inquiry include:
- Variables to consider in the initial placement of CSF shunts
- Associated infection risks of shunts and treatment methods
- Effect of a shunt on lifespan and a child’s quality of life
Other clinical and research efforts at our center include:
- Evaluating the benefits of prenatal counseling for pregnant mothers having a fetus with neural tube defects — how does counseling affect decision making and disease management?
- Conducting ongoing multicenter projects that:
- Evaluate effectiveness of medical and surgical interventions to attain bowel and bladder continence, the conditions that often have the greatest impact on day-to-day life
- Evaluate patient and parent satisfaction with quality of life after medical and surgical interventions
- Develop common definitions for bowel and bladder continence