Comp B-Primary Children's Hospital Spina Bifida Patient Registry

Comp B-小学儿童医院脊柱裂患者登记处

• 批准号: 8915961
• 负责人: PAULA RUTH PETERSON
• 金额: $ 6.68万
• 依托单位: IHC HEALTH SERVICES, INC.
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-01 至 2019-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8915961
• 关键词: Comp; Primary; Children; Hospital; Spina

DESCRIPTION (provided by applicant): This funding opportunity is to determine what constitutes best practices for people with spina bifida and to influence the provision care. Through component B, longitudinal data will continue to be collected and used to compare differences in interventions and outcomes among participating programs. This is critical in addressing the public health impact of spina bifida and necessary improvements in population health. Current research is limited in addressing and evaluating advances over the last 10 to 15 years. Defining best practices and outcomes through a patient registry has the potential of changing conjectures to documented clinical outcomes, advancing the health and independence of individuals with spina bifida The Spina Bifida program at Primary Children's Hospital provides a multidisciplinary clinic to meet complex needs of individuals with spina bifida in Utah and surrounding states, Wyoming, Idaho, Nevada, and Montana. The program consistently enrolls 18 infants with open spina bifida each year and 10 with closed lesions. Unique patient visits each year average 214 with 35 new patients. We are a pediatric tertiary facility of a major healthcare agency, which provides a robust data set for linkage. The Spina Bifida Program has been involved in the current NSBPR providing data on 344 new patients and 540 follow up annual reports. The goal of involvement in the NSBPR is to improve care at our center and at a national level through comparative effective research for which the NSBPR was designed to facilitate.

描述（由申请人提供）：这个资金机会是确定哪种构成脊柱裂的人的最佳实践并影响了供应护理。通过组件B，将继续收集纵向数据，并用于比较参与计划之间的干预措施和结果的差异。这对于解决脊柱裂的公共卫生影响以及人口健康的必要改善至关重要。当前的研究在过去10到15年中解决和评估进步方面受到限制。 Defining best practices and outcomes through a patient registry has the potential of changing conjectures to documented clinical outcomes, advancing the health and independence of individuals with spina bifida The Spina Bifida program at Primary Children's Hospital provides a multidisciplinary clinic to meet complex needs of individuals with spina bifida in Utah and surrounding states, Wyoming, Idaho, Nevada, and Montana.该计划每年始终招募18名患有开放式脊柱裂的婴儿，10个患有封闭病变的婴儿。独特的患者每年平均访问35名新患者。我们是一家主要医疗机构的儿科三级设施，该机构为联系提供了强大的数据集。 Spina Bifida计划参与了当前的NSBPR，提供了344名新患者的数据和540例随访年度报告。参与NSBPR的目的是通过对NSBPR旨在促进的比较有效研究来改善我们中心和国家一级的护理。