Spina bifida (SB) is a serious birth defect, and is the most common of the neural tube defects (NTDs). The prevalence of SB among children and youth ages 0 to 19 years old in 2002 was 3.1 per 10,000 children (Shin, 2010). This proposal is designed to establish a prospective patient registry of all children with SB who receive care at Seattle Children's Hospital (SCH) Neurodevelopmental (NDV) Clinic. 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 years who attend NDV clinic or receive inpatient care at SCH, who have an eligible diagnosis of SB, and who plan to return to clinic at least once in the next 12 months will be eligible to participate. Dta will be collected for each participant at one annual visit per year, using data recorded in the hospital electronic and paper medical record. 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 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 help us learn which interventions are the safest, are most cost-effective, and promote full participation in work and life among people with SB.
|Liu, Tiebin; Ouyang, Lijing; Thibadeau, Judy et al. (2018) Longitudinal Study of Bladder Continence in Patients with Spina Bifida in the National Spina Bifida Patient Registry. J Urol 199:837-843|