SB is a serious birth defect, and is the most common of the neural tube defects (NTDs). As of 2001, 20.09 in 100,000 live births in the US were diagnosed with SB at birth (CDC, 2009). It is important to discover the best ways to treat SB and manage its symptoms. This proposal is to establish a prospective patient registry of all children with SB who receive care at Seattle Children's Hospital (SCH) Neurodevelopmental (NDV) Clinic or inpatient services. Creating a registry for children with SB will gather information that we can use to determine which treatments are most effective, which problems children with SB develop, and how SB develops over the lifespan. The objectives of this project are: 1) To establish a SB registry at SCH for children and adolescents with SB who receive care at NDV clinic, 2) To identify best practices for the care of children and adolescents with SB, and 3) To identify areas of future research regarding SB. Children ages 0-22 who attend NDV clinic or receive inpatient care at SCH, who have a diagnosis of SB or related neural tube disorder, and who plan to return to clinic at least once in the next 12 months will be eligible to participate in the registry. Data will be collected for each participant at one annual visit per year for three years, using data recorded in the hospital electronic and paper medical record. The registry electronic medical record (EMR) will be used to access registry questions and to enter registry data. Data analysis will be guided by the registry coordinating committee, and will be to identify best practices for SB care and future improvements to the registry.
Spina bifida (SB) is a serious birth defect, and is a major source of childhood disability in the United States. People with SB are typically affected by many complex medical problems throughout their lives, whose combined effectiveness and long term effects have been poorly studied. A SB patient registry will guide determination of best practices for SB care and future areas for SB clinical research.
