Seattle Children's Hospital Spina Bifida Registry

点击翻译按钮获取中文摘要

DESCRIPTION: (Provided by applicant.) Spina bifida (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 were diagnosed with SB at birth (Centers for Disease Control, 2002). This proposal is to establish a prospective patient registry of all children with SB who receive care at Children's Hospital and Regional Medical Center (CHMRC) Neurodevelopmental (NDV) Clinic or inpatient services. The objectives of this project are: 1) To establish a SB registry at CHRMC 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 CHRMC, 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.