Component B. National Spina Bifida Patient Registry (NSBPR)

组成部分 B. 国家脊柱裂患者登记处 (NSBPR)

• 批准号: 10350529
• 负责人: Kathryn A. Navarette Smith
• 金额: $ 8万
• 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/10350529
• 关键词: Component; B.; National; Spina; Bifida

Abstract The goal of this project is to continue to participate in the National Spina Bifida Patient Registry. This proposal aims to: 1) collect data for inclusion in the SB Registry including health status, interventions and outcomes, to better understand the needs of the population, improve the quality of care and optimize health; 2) contribute to the body of knowledge about the SB population through the conduct of high quality, collaborative research, utilizing existing Registry data; and 3) improve the clinical care and outcomes for patients with spina bifida cared for in the CHLA Spina Bifida Program. Spina bifida affects about 1600 of the approximately 3.8 million babies born in the country each year; an estimated 160,000 people in the United States are currently living with the condition (myelomeningocele, lipomeningocele and meningocele). In myelomeningocele, typical impairments include hydrocephalus, Chiari II malformation, neurogenic bowel and/or bladder resulting in incontinence, muscle weakness and lack of sensation in lower extremities, and cognitive dysfunction. These impairments can have significant impact on day-to-day living and can interfere with school, work and other community activities. Given the myriad symptoms that can be present in SB, the condition can have a significant impact on quality of life. The National Spina Bifida Patient Registry is an important vehicle for understanding and preventing primary and secondary conditions associated with SB, potentially leading to improved health, reduced health care costs and improved quality of life. Research resulting from the use of Registry data 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 continued enrollment of patients, and improve 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.

抽象的 该项目的目标是继续参与全国脊柱裂患者 登记处。该提案旨在：1) 收集数据以纳入 SB 登记处，包括 健康状况、干预措施和结果，以更好地了解人们的需求 人口，提高护理质量并优化健康状况； 2）对身体有贡献 通过开展高质量、协作性的活动，了解 SB 群体的知识 研究，利用现有的登记数据； 3) 改善临床护理和结果 适用于在 CHLA 脊柱裂计划中接受护理的脊柱裂患者。脊柱裂 该国出生的约 380 万婴儿中的约 1600 人受到影响 年;据估计，美国目前有 160,000 人生活在这种情况下 病症（脊髓脊膜膨出、脂肪脑膜膨出和脑膜膨出）。在 脊髓脊膜膨出，典型的损伤包括脑积水、Chiari II 畸形、 神经源性肠道和/或膀胱导致失禁、肌肉无力和缺乏 下肢感觉障碍和认知功能障碍。这些损伤可以 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。鉴于 SB 可能出现多种症状， 状况会对生活质量产生重大影响。国家脊柱裂 患者登记是了解和预防原发性和 与 SB 相关的继发性疾病，可能会改善健康状况， 降低医疗保健费用并提高生活质量。使用产生的研究结果 注册数据有助于确定可普遍采用的最佳实践 SB 诊所社区，从而改善对所有患者的护理。 项目目标的实现将有助于增加有关该项目的科学知识 通过持续招募患者，改善临床护理 通过强有力的研究工作来确定最佳实践。我们的目标是 改善护理、生活质量、长期健康并充分融入医疗保健的所有要素 这一重要人群的社区生活。