National Spina Bifida Patient Registry
The Centers for Disease Control and Prevention (CDC) fund Children's Hospital for the National Spina Bifida Patient Registry (NSBPR).
What does this mean for your child? According to the CDC's website, the "Registry provides the framework for a systematic approach to improving the quality of care received at spina bifida clinics nationwide."
The data the CDC collect from us help all medical centers improve our treatment and care of patients with spina bifida. This takes place as we learn more about how our treatments compare with patients' health outcomes.
So, when your child receives care for this condition at Children's Hospital, your family benefits from the Registry's findings. And the data we collect during your child's care goes to help other children with spina bifida and their families.
Preventing skin problems
Children's Hospital also partners with the CDC to help educate families about skin problems associated with spina bifida diagnoses.
Children with this condition may experience a loss of feeling in their legs due to spinal cord damage. This means they may not be able to feel pain normally associated with cuts, bruises, or injuries. Skin damage is a side effect of this problem.
The Spina Bifida Association has made available the following downloadable resources to help you learn to do daily skin checks of your child, or for yourself if you are an adult who has transitioned from pediatric spina bifida care.