Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida- Component C

项目摘要--组成部分C 新生儿和幼儿脊柱裂的泌尿外科治疗目前是基于 教条和“专家意见”，这是在确定“最佳做法”标准时的一个重大限制。它是 公认患有脊柱裂的新生儿有90%的肾功能和肾脏外观正常。 如果无人照看，大约50%的儿童在5岁时会遇到某种程度的肾脏损害。那里 是否需要对患有脊柱裂的新生儿和幼儿进行标准化的泌尿外科护理 保护肾功能和控制不良膀胱功能的管理方案。建议数 小儿脊柱裂保留初始肾功能的泌尿外科治疗方案 (裁判员协议)从出生到10岁，提供了发展证据的机会-- 基于模型的护理儿童的神经原性膀胱继发于脊柱裂。所需的 该协议的结果是在以代价利用资源的同时，保存和保护正常的肾功能 高效的时尚。 上一个供资周期为裁判议定书提供了框架，并描述了 儿童脊柱裂从出生到出生前5年的治疗方案。继续追随 这些儿童在接下来的5年里，直到10岁，将在验证儿童教育的成功方面发挥至关重要的作用 协议按规定执行。阿拉巴马大学伯明翰分校(UAB)招收了35名裁判 该项目代表了100%出生的脊柱裂患者在我们的网站。 在整个协议期间，对膀胱功能的测试将与 肾功能和外观的评估。数据是持续收集的，然后发送 以电子方式发送到疾控中心进行分析。当协议变得明显变化时，可能会发生协议变化 会改善肾脏健康。 一个成功的结果具有普遍的吸引力，并有可能使儿童的护理标准化 所有神经性疾病中的神经原性膀胱功能障碍，其中脊柱裂占最大 基于病因学的百分比。这一点变得极其重要，不仅对于关心 患有神经性异常膀胱的儿童，但也适用于没有患者容量的较小中心 这将使他们能够根据自己的数据对管理层做出任何合理的预测。在……里面 除了继续提供目前登记的35名患者的数据点外，UAB还打算继续 在我们的网站上登记所有出生时患有脊柱裂的新生儿。最后，UAB提出了一个项目，以 在国家脊柱裂患者登记中确定膀胱敌意的发生率 在裁判员协议开始之前，并将其与患者登记在裁判员中进行比较。

Project Summary- Component C The urologic management of the newborn and young child with spina bifida is currently based on dogma and “expert opinion”, a significant limitation when it comes to determining “best practice” standards. It is accepted that >90% of newborns with spina bifida have normal kidney function and normal appearing kidneys. If unattended; approximately 50% encounter some degree of kidney compromise by the age of 5 years. There is a need for standardization of the urologic care of the newborn and young child with spina bifida using a management protocol that will protect kidney function and control hostile bladder function. The proposed Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE Protocol) from birth through the age of 10 years provides the opportunity to develop an evidenced- based model for the care of children with a neurogenic bladder secondary to spina bifida. The desired outcome of the protocol is to preserve and protect normal kidney function while utilizing resources in a cost efficient fashion. The previous funding cycle provided the framework for the UMPIRE protocol and described the treatment regimen for the child with spina bifida from birth through the first 5 years of life. Continuing to follow these children for the next 5 years, until age 10, will be critically important in validating the success of the protocol as written. The University of Alabama at Birmingham (UAB) has enrolled 35 patients in the UMPIRE project which represents 100% of patients born with spina bifida at our site. Throughout the duration of the protocol, testing of bladder function is undertaken along with assessment of kidney function and appearance. Data is collected on an ongoing basis that is sent electronically to the CDC for analysis. Changes to the protocol may occur when it becomes apparent changes would improve kidney health. A successful outcome has universal appeal and the potential to standardize the care of children with neurogenic bladder dysfunction across all neuropathic disorders of which spina bifida makes up the greatest percent based on etiology. This becomes exceedingly important not only for the large centers caring for children with a neurogenically abnormal bladder but also for smaller centers that don’t have the patient volume that would allow them to make any reasonable predictions on management based on their own data. In addition to continuing to provide data points on the 35 patients currently enrolled, UAB also intends to continue patient enrollment of all newborns born with spina bifida at our site. Finally, UAB has proposed a project to determine the incidence of bladder hostility in patients enrolled in the National Spina Bifida Patient Registry prior to the beginning of the UMPIRE protocol and compare that with patients enrolled in the UMPIRE.