Childrens Hospital Los Angeles Spina Bifida Registry

描述：(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标是参与测试洛杉矶儿童医院用于收集脊柱裂患者数据的标准化登记工具的使用情况，以便更多地了解脊柱裂儿童人口，提高对这些患者的护理质量，并确定未来研究的领域。这一示范项目的希望是最终为脊柱裂儿童的照顾者创建一个通用的数据收集系统，以在全国范围内标准化和改善对这些人的护理。洛杉矶儿童医院的研究人员在访问脊柱裂中心时，将联系出生到21岁的儿童及其父母。家庭将被邀请参加由疾病和预防中心资助的脊柱裂患者登记示范项目。在将该项目告知该家庭并接受自愿参与后，研究人员将获得父母同意和孩子的同意。将使用脊柱裂国家患者登记工具，审查登记患者的病历，以确定和收集信息，以便输入登记处。目标登记人数将为连续3年每年至少125名患者。将为今后的研究和质量改进工作提供信息。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洛杉矶儿童医院收集脊柱裂患者数据的标准化登记工具的使用情况的测试，以提高脊柱裂患者的护理质量，并确定未来研究的领域。该项目通过增加对患有脊柱裂的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，美国目前有7万人患有脊柱裂。通过研究这一人群的健康问题，可以确定改善护理和生活质量并降低卫生保健成本的干预措施和战略。

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.