Component C. Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE Protocol)

部分 C. 为脊柱裂幼儿保留初始肾功能的泌尿系统治疗方案（UMPIRE 方案）

• 批准号: 10350539
• 负责人: Kathryn A. Navarette Smith
• 金额: $ 2.5万
• 依托单位: CHILDREN'S HOSPITAL OF LOS ANGELES
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-01 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10350539
• 关键词: Component; C.; Urologic; Management; Preserve

Abstract The Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE Protocol) goal is to implement and evaluate a urologic protocol for young children with spina bifida through the collection of data and careful study of results, to optimize the long term renal health of these patients. This proposal aims to: 1) Implement and evaluate the UMPIRE Protocol for young children with spina bifida, 2) Support standardization of the documentation of urology test results, 3) Conduct high quality, collaborative research projects with other sites, and 4) Improve the care and outcomes for SB patients at CHLA. Spina bifida affects about 1600 of the approximately 3.8 million babies born in the country each year, resulting from incomplete closure of the neural tube and protrusion of the spinal membrane at 28 days gestation, and includes myelomeningocele, lipomeningocele and meningocele. In myelomeningocele, typical impairments include hydrocephalus, Chiari II malformation, neurogenic bowel, neurogenic bladder, decreased mobility and lack of sensation in lower extremities, and cognitive dysfunction. Patients with neurogenic bladder are at high risk of developing recurrent urinary tract infections, reflux nephropathy and in extreme cases if untreated, renal failure. In addition, children with neurogenic bladder often suffer from significant incontinence of urine that effects social functioning. These impairments can have significant impact on day-to-day living and can interfere with school, work and other community activities. Realizing the importance of renal insufficiency and survival has been pivotal to improved quality of life and life expectancy. The UMPIRE Protocol is an important vehicle for understanding and preventing primary and secondary conditions associated with SB, in particular, those related to renal function. Research resulting from the protocol can help to identify best practices that can be universally adopted by the community of SB clinics, thereby leading to improved care for all patients. Achievement of project goals will serve to increase scientific knowledge about the population through improved clinical care resulting from identification of best practices through robust research efforts. Our goal is to improve the care, quality of life, long term health and full inclusion in all elements of community life for this important population.

摘要 年轻患者保留初始肾功能的泌尿外科治疗方案 儿童脊柱裂(裁判协议)的目标是实施和评估 儿童脊柱裂的泌尿外科方案通过收集资料和 仔细研究结果，以优化这些患者的长期肾脏健康。这 提案的目的是：1)执行和评估《幼儿裁判议定书》 对于脊柱裂，2)支持尿路检查文件的标准化 成果，3)与其他网站进行高质量的协作研究项目，以及4) 改善CHLA SB患者的护理和预后。脊柱裂影响约 这个国家每年出生的大约380万婴儿中的1600人，导致 从神经管的不完全闭合和28岁的脊膜突出 妊娠天数，包括脊髓脊膜膨出、脂肪脊膜膨出和脑膜膨出。在……里面 脊髓脊膜膨出，典型的损害包括脑积水，Chiari II畸形， 神经原性肠、神经原性膀胱、活动减少和感觉缺乏 以及认知功能障碍。神经源性膀胱的患者在 发生反复尿路感染、反流性肾病和糖尿病的高风险 极端情况下，如果不治疗，就会出现肾功能衰竭。此外，神经原性膀胱的儿童 经常患有严重的尿失禁，影响社会功能。这些 损伤可能对日常生活产生重大影响，并可能干扰 学校、工作和其他社区活动。认识到肾脏的重要性 不足和生存一直是提高生活质量和生活质量的关键 期望值。裁判员协议是理解和 预防与某人有关的主要和次要疾病，特别是那些 与肾功能有关。从协议中得出的研究可以帮助确定最好的 可被某人诊所社区普遍采用的做法，从而 从而改善了对所有患者的护理。项目目标的实现将有助于 通过改善临床护理增加关于人口的科学知识 这是通过强有力的研究努力确定最佳做法的结果。我们的目标 是改善护理、生活质量、长期健康和全面纳入 这一重要群体的社区生活。