Comp C-Improving the Care and Outcomes of People Living with Spina Bifida, Component C

描述(由申请人提供)：患有脊柱裂的新生儿和幼儿的泌尿外科治疗目前是基于教条和“专家意见”，这是在确定“最佳实践”标准时的一个重大限制。公认的是，90%的脊柱裂新生儿肾功能正常，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。有必要对患有脊柱裂的新生儿和幼儿的泌尿外科护理进行标准化，使用一种保护肾功能和控制有害膀胱功能的管理方案。拟议的脊柱裂儿童从出生到5岁的肾功能保护方案提供了一个机会，为护理继发于脊柱裂的神经原性膀胱的儿童提供了一个循证模式。该协议的预期结果是在以经济高效的方式利用资源的同时，保存和保护正常的肾功能。该方案跟踪患有脊柱裂的儿童从出生到生命的前5年，他们最脆弱的生长期重点放在最初的新生儿评估和预测哪个孩子有肾脏损伤风险的能力上。有风险的儿童开始接受一系列处方治疗计划，包括间歇性导尿排尿和药物治疗 帮助逆转有害的膀胱对肾脏的影响。在整个治疗过程中，除了评估肾功能和外观外，还要进行膀胱功能测试。数据是持续收集的，将以电子方式发送给疾控中心进行分析。该方案是动态创建的，如果这些变化明显会改善肾脏健康，可能会发生变化。一个成功的结果具有普遍的吸引力，并有可能标准化对所有神经性疾病中患有神经源性膀胱功能障碍的儿童的护理，其中脊柱裂在病因上占最大比例。这一点变得极其重要，不仅对于照顾患有神经遗传学异常膀胱的儿童的大型中心来说，而且对于那些没有足够的患者数量的较小中心来说也是如此，这些中心无法根据自己的数据对管理做出任何合理的预测。

DESCRIPTION (provided by applicant): 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% children 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 harmful bladder function. The proposed Urologic Protocol for the Protection of Kidney Function in children with spina bifida from birth through the age of 5 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 protocol follows the chld with spina bifida from birth through the first 5 years of life, their most vulnerable growth period Emphasis is placed on the initial newborn evaluation and the ability to predict which child is at risk for kidney damage. Children at risk are started on a combination of prescribed treatment plans that include intermittently catheterizing their bladder to eliminate urine and medications to help reverse harmful bladder effects on the kidney. 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 will be sent electronically to the CDC for analysis. The protocol is created to be dynamic and alterations may occur if it becomes apparent those 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.