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

描述（由申请人提供）：这个资助机会是为了确定什么是脊柱裂患者的最佳实践，并影响提供护理。通过组件B，将继续收集纵向数据，并用于比较参与项目之间干预措施和结果的差异。这对于解决脊柱裂对公众健康的影响和必要的改善人口健康至关重要。目前的研究在处理和评估过去10到15年的进展方面是有限的。通过患者登记来定义最佳实践和结果有可能改变对记录临床结果的推测，促进脊柱裂患者的健康和独立性。初级儿童医院的脊柱裂项目提供了一个多学科的诊所，以满足犹他州及其周边州、怀俄明州、爱达荷州、内华达州和蒙大拿州脊柱裂患者的复杂需求。该项目每年持续招募18名患有开放性脊柱裂的婴儿和10名患有闭合性病变的婴儿。每年平均有214名患者就诊，其中有35名新患者。我们是一家大型医疗机构的儿科三级设施，为链接提供了强大的数据集。脊柱裂项目参与了目前的NSBPR，提供了344名新患者的数据和540份年度随访报告。参与NSBPR的目标是通过比较有效的研究来改善我们中心和国家层面的护理，NSBPR旨在促进这些研究。

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.