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

项目摘要 阿拉巴马大学伯明翰分校(UAB)一直致力于国家脊柱裂患者 登记处(NSBPR)自成立以来。美国疾病控制与预防中心认识到登记制度的必要性和好处，以促进 在脊柱裂患者的所有医疗保健领域都取得了进展，并建立了NSBPR。的目标是 这项倡议是为了提高医疗保健的质量以及了解人口统计情况 以及脊柱裂的个体特征。 UAB致力于继续收集儿童和成人脊柱裂的纵向数据 我们的诊所。这些数据将用于通过比较确定最佳实践来提高护理质量 参与的诊所之间干预措施和结果的差异。UAB在这方面有独特的贡献 既有儿科诊所，也有成人多学科诊所。儿科人口超过500人。 而成年人口只有200多名患者。这些患者中的许多人已经被纳入NSBPR 从一开始并继续提供有关它们的纵向数据对于理解 随着时间的推移，治疗发明会对患者产生影响。 在NSBPR的前几个资助周期中，UAB在患者登记方面取得了成功，及时 报道，以及提出和发表的研究报告。两篇主要的神经外科论文是用 NSBPR数据由UAB发布。此外，还发表了17个项目，贡献来自 UAB使用本地和聚合NSBPR数据。 如果获奖，我们打算在下一个筹资周期内利用当地和总体完成项目 NSBPR数据。当地项目包括：1)评估患者基线睡眠研究的贡献 有无睡眠呼吸障碍症状(SDB)；来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；研究体重指数在其中所起的作用 步态会随着时间的推移而变化。协调一项关于NSBPR合计队列的研究 以前没有接受过手术治疗的神经闭合不全。这份强大的项目清单将提供 对了解脊柱裂患者的护理有很大贡献。

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.