Childrens Hospital Los Angeles Spina Bifida Registry

描述：（由申请人提供）洛杉矶儿童医院脊柱裂患者登记示范项目该项目的目的是参与测试在洛杉矶儿童医院使用标准化登记工具收集脊柱裂患者的数据，以便更多地了解脊柱裂儿童的人群，提高对这些患者的护理质量，并确定未来的研究领域。这个示范项目的希望是最终为脊柱裂儿童护理人员建立一个通用的数据收集系统，以标准化和改善全国对这些个体的护理。洛杉矶儿童医院的研究人员将在访问脊柱裂中心时联系出生至21岁的儿童及其父母。家庭将被邀请参加疾病和预防中心资助的脊柱裂患者登记示范项目。在将项目告知家庭并获得自愿参与后，研究人员将获得家长和儿童的同意。将使用脊柱裂国家患者登记工具审查入组患者的图表，以确定并收集信息输入到登记处。目标入组人数为连续3年每年至少125例患者。这些信息将用于今后的研究和质量改进工作。洛杉矶儿童医院脊柱裂患者登记示范项目该项目的目标是参与测试洛杉矶儿童医院脊柱裂患者收集数据的标准化登记工具的使用情况，以提高脊柱裂患者的护理质量，并确定未来研究的领域。该项目通过增进对脊柱裂儿童和青年的健康状况和保健的了解，与公共卫生有关。据估计，目前美国有7万人患有脊柱裂。通过研究这一人口的健康问题，可以确定干预措施和战略，以改善护理和生活质量，并降低保健费用。

DESCRIPTION: (Provided by applicant.) Spina Bifida Patient Registry Demonstration Project at Childrens Hospital Los Angeles The goal of this project is to participate in testing the utilization of a standardized registry tool for collecting data on patients with spina bifida at Childrens Hospital Los Angeles, in order to learn more about the population of children with spina bifida, to improve the quality of care for these patients, and to identify areas of future research. The hope for this demonstration project is the eventual creation of a universal data collection system for caregivers of children with spina bifida to standardize and improve care for these individuals nationally. Researchers at Childrens Hospital Los Angeles will contact children ages birth to 21 years and their parents when they visit the Spina Bifida Center. Families will be invited to enroll in the Center for Disease and Prevention funded Spina Bifida Patient Registry Demonstration Project. After informing the family of the project and receiving voluntary participation, the researchers will obtain parent consent and child assent. Enrolled patients' charts will be reviewed to identify and gather information for input into the registry, using the Spina Bifida National Patient Registry Tool. Target enrollment will be a minimum of 125 patients per year for 3 consecutive years. Information will be available for future research and quality improvement efforts. Spina Bifida Patient Registry Demonstration Project at Childrens Hospital Los Angeles The goal of this project is to participate in testing the utilization of a standardized registry tool for collecting data on patients with spina bifida at Childrens Hospital Los Angeles, in order to improve the quality of care for patients with spina bifida, and identify areas for future research. This project is relevant to public health by increasing the understanding of the health status and health care of children and youth with spina bifida. It is estimated that 70,000 people in the United States are currently living with spina bifida. By studying the health issues of this population, interventions and strategies can be identified to improve care and quality of life, and reduce health care costs.