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

描述(由申请人提供)：这一资助机会是为了确定什么是脊椎裂患者的最佳实践，并影响护理的提供。通过组成部分B，将继续收集纵向数据，并用于比较不同参与方案在干预措施和结果方面的差异。这对于解决脊柱裂对公众健康的影响和对人口健康的必要改善至关重要。目前的研究仅限于解决和评估过去10到15年的进展。通过患者登记定义最佳实践和结果有可能将猜测转变为有记录的临床结果，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诊所，以满足犹他州和周边州、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。该计划每年持续招募18名开放性脊柱裂婴儿和10名闭合性脊柱裂婴儿。独一无二的患者每年平均就诊214人次，新增患者35人。我们是一家主要医疗保健机构的儿科三级机构，为联系提供了强大的数据集。脊柱裂计划参与了目前的NSBPR，提供了344名新患者的数据和540份后续年度报告。参与NSBPR的目标是通过NSBPR旨在促进的比较有效的研究，改善我们中心和国家层面的护理。

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.