Comp C-Urologic Management Protocol for Young Children with SB

描述（由申请人提供）：C部分本项目的目的是实施和评价脊柱裂新生儿/幼儿保留肾功能（UPPF）的最佳实践泌尿科管理方案。该方案的目标是为患有脊柱裂的婴幼儿制定标准化和有效的泌尿系统管理，以保护肾功能，为长期康复奠定基础，并优化长期健康和福祉。据估计，美国目前有7万人生活在 脊柱裂大多数脊柱裂患者会出现与其病情相关的泌尿系统并发症，包括尿失禁和可能的肾损害。在过去的几十年里，我们对儿童神经源性膀胱功能障碍的病理生理学的理解取得了重大进展，这使得更早，更积极的治疗干预措施，旨在预防肾功能恶化。肾衰竭历来是脊髓脊膜膨出（MMC）患者死亡的主要原因，据报道占死亡人数的三分之一。在MMC儿童中，积极的尿动力学检查、清洁的间歇性导尿、抗生素预防和抗胆碱能治疗等现代管理的显著影响显示总体肾实质损伤率显著降低。该项目具有创新性，因为它是一项长期前瞻性研究，旨在测试和评估从新生儿期开始对脊柱裂患者使用标准化泌尿外科管理方案的情况。通过该项目收集的数据将为研究人员和临床医生提供一个强大的数据库，以测试系统的泌尿系统方案，并检查人群的长期泌尿系统状态，从而制定基于证据的临床干预措施，以改善护理结果和生活质量。项目目标包括对CHLA教职员工的宣传和教育，每年从我们的新生儿和婴儿重症监护室招募5-10名新生儿，实施泌尿系统方案并收集和提交数据给CDC，调查标准化工作流程对患者依从性和整体肾脏结局的影响，评估父母和工作人员对泌尿系统方案的满意度，参与其他网站的研究，并传播研究结果。

DESCRIPTION (provided by applicant): Part C The aim of this project is to implement and evaluate a best practice Urologic Management Protocol for the Preservation of Renal Function (UPPF) in the Newborn/Young Child with Spina Bifida. The goal of the protocol is to develop standardized and effective urologic management in infants and young children with spina bifida, to preserve kidney function, lay the groundwork for long term continence and optimize long term health and well-being. It is estimated that 70,000 people in the United States are currently living with spina bifida. The majority of patients with spina bifida experience urologic complications related to their condition, including incontinence and possibly renal damage. Over the past several decades, significant advancements have been made in our understanding of the pathophysiology of neurogenic bladder dysfunction in children, which has allowed for earlier, more proactive therapeutic interventions aimed at the prevention of renal deterioration. Renal failure has historically been the leading cause of mortality in patients with myelomeningocele (MMC) followed through adulthood, reportedly accounting for a third of deaths. The significant impact of contemporary management with proactive urodynamic investigation, clean intermittent catheterization, antibiotic prophylaxis and anticholinergic therapy in children with MMC has shown a marked reduction in the rate of overall renal parenchymal damage. This project is innovative as it is a long term prospective study to test and evaluate the use of a standardized urologic management protocol for patients with spina bifida, beginning in the neonatal period. The data gathered through this project will provide researchers and clinicians with a robust database to test a systematic urologic protocol and to examine the long term urologic status of the population, enabling the development of evidence based clinical interventions to improve care outcomes and quality of life. Project objectives include outreach and education to CHLA faculty and staff, recruitment of 5-10 newborns per year from our Neonatal and Infant Critical Care Unit, implementation of the urologic protocol and collection and submission of data to the CDC, investigation of the effects of a standardized workflow on patient adherence and overall renal outcomes, assessment of parent and staff satisfaction with the urologic protocol, participation in research with other sites, and dissemination of findings.