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

改善脊柱裂患者的护理和结果的研究方法 - B 部分

• 批准号: 10349418
• 负责人: Jeffrey P Blount
• 金额: $ 7万
• 依托单位: UNIVERSITY OF ALABAMA AT BIRMINGHAM
• 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/10349418
• 关键词: Research; Approaches; Improve; Care; Outcomes

Project Summary The University of Alabama at Birmingham (UAB) has been dedicated to the National Spina Bifida Patient Registry (NSBPR) since its inception. The CDC recognized the need and benefits of a registry to promote advances in all areas of health care for individuals with spina bifida and established the NSBPR. The goal of this initiative was to improve the quality of healthcare as well as to gain an understanding of the demographics and characteristics of individuals with spina bifida. UAB is committed to continue the collection of longitudinal data on children and adults with spina bifida seen in our clinics. These data will be used to promote quality of care by determining best practices through comparing differences in interventions and outcomes among participating clinics. UAB has a unique contribution in that there is both a pediatric and adult multidisciplinary clinic. The pediatric population is more than 500 patients and the adult population is just over 200 patients. Many of these patients have been included in the NSBPR since the beginning and continuing to provide longitudinal data on them is critical to understanding how treatment inventions impact patients over time. UAB has been successful in the previous funding cycles of the NSBPR in terms of patient enrollment, timely reporting, and research presented and published. Two of the major neurosurgical papers produced using NSBPR data were published from UAB. There have also been 17 projects published with contribution from UAB using local and aggregate NSBPR data. If awarded, during the next funding cycle we intend to complete projects using both local and aggregate NSBPR data. Local projects include 1) the assessment of the contribution of baseline sleep studies in patients with and without symptoms for sleep disordered breathing (SDB); 2.) to study the adult population to describe their need for surgical intervention after transitioning to adult care. Projects with aggregate data include 1.) to study SDB using the new NSBPR sleep variables; 2.) to investigate the impact that body mass index plays in ambulation changes over time and 3.) to coordinate a study on the aggregate NSBPR cohort with closed dysraphisms that have not previous undergone surgical intervention. This robust list of projects will provide a great contribution to the understanding of the care of individuals with spina bifida.

项目概要 阿拉巴马大学伯明翰分校 (UAB) 一直致力于帮助全国脊柱裂患者 登记处（NSBPR）自成立以来。疾病预防控制中心认识到登记处的必要性和好处，以促进 脊柱裂患者的所有医疗保健领域都取得了进步，并建立了 NSBPR。目标是 该举措旨在提高医疗保健质量并了解人口统计数据 以及脊柱裂患者的特征。 UAB 致力于继续收集患有脊柱裂的儿童和成人的纵向数据 我们的诊所。这些数据将用于通过比较确定最佳实践，从而提高护理质量 参与诊所之间的干预措施和结果存在差异。 UAB 在这方面有独特的贡献 设有儿科和成人多学科诊所。儿科患者人数超过500名 成年人口只有 200 多名患者。其中许多患者已被纳入 NSBPR 从一开始就持续提供有关它们的纵向数据对于理解如何 随着时间的推移，治疗发明会对患者产生影响。 UAB 在 NSBPR 之前的资助周期中在患者入组、及时性方面取得了成功 报告以及提出和发表的研究。两篇主要的神经外科论文使用 NSBPR 数据由 UAB 发布。还发表了 17 个由以下机构贡献的项目 UAB 使用本地和聚合 NSBPR 数据。 如果获得资助，我们打算在下一个资助周期内使用本地和总体来完成项目 NSBPR 数据。当地项目包括 1) 评估基线睡眠研究对患者的贡献 有或没有睡眠呼吸障碍 (SDB) 症状； 2.) 研究成年人口来描述 他们在过渡到成人护理后需要手术干预。具有汇总数据的项目包括 1.) 至 使用新的 NSBPR 睡眠变量研究 SDB； 2.) 研究体重指数的影响 步行随着时间的推移而变化，3.) 协调一项关于封闭式 NSBPR 队列的研究 先前未接受过手术干预的闭合不全。这份强大的项​​目清单将提供 对了解脊柱裂患者的护理做出了巨大贡献。