Spina Bifida

The Spina Bifida Clinic at Riley Hospital for Children at Indiana University Health provides comprehensive care for children and adolescents with spina bifida. Spina bifida is a complex condition that affects multiple body systems. Patients with spina bifida typically face a combination of neurological, orthopedic and urological issues, as well as social, developmental and learning difficulties. The complexity of care required can be a challenge for families.

MULTIDISCIPLINARY CARE FOR COMPLEX NEEDS

The Spina Bifida Clinic is multidisciplinary, which means complex care can be given by multiple providers in one place at one visit. This inclusive approach allows us to better understand each child’s needs and to problem solve much more efficiently. 

The clinic is staffed by physicians and nurse practitioners. Additionally, there are neurosurgeons, urologists, orthopedists, physical and occupational therapists, dietitians, physical medicine and rehabilitation specialists who provide care to patients. There are also social workers and staff who specialize in wheelchair, bracing and other adaptive equipment. Physical, cognitive and family issues can all be addressed by clinic staff.

NATIONAL SPINA BIFIDA PATIENT REGISTRY

The clinic at Riley Hospital for Children at IU Health was one of the original participating sites for the Centers for Disease Control National Spina Bifida Patient Registry (NSBPR). The Spina Bifida Association noted nationwide differences in patient care and advocated for the registry to be established. Annually, clinic patients answer a series of questions about their care. The answers are provided anonymously to the CDC for analysis. The CDC compares the data for all participating clinics to identify the most helpful care for patients, plus areas of clinical practice where additional research is required.

RESOURCES

Spina Bifida Association: The Spina Bifida Association is a national advocate for education and research about spina bifida. The site provides ways to connect with others and information about local chapters and clinics.

Spina Bifida Association of Indiana: The Spina Bifida Association of Indiana includes parents of individuals with spina bifida, adults with spina bifida and professionals who care for those with spina bifida. This group supports and encourages families and individuals throughout Indiana.

Family Voices Indiana: Family Voices Indiana supports families of children and teens who have special healthcare needs or disabilities and the healthcare professionals who care for them.

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