Comp B-Improving Care of Wisconsin Residents Living with Spina Bifida: The NSBPR

描述（由申请人提供）：脊柱裂（SB）是一组由妊娠早期神经管发育畸形引起的先天性疾病，是当今我国最常见的致残疾病之一。这些条件导致广泛的脊髓和中枢神经系统损伤，影响许多身体系统。进一步使SB患者的护理复杂化的是，缺乏关于临床项目中潜在健康问题的患病率或严重性的知识，以及SB患者的临床表现的显著差异。 健康成果。国家脊柱裂患者登记处（NSBPR）就是为了解决这一问题而开发的。该项目的总体目标是改善对患有 某人我们继续积极参与NSBPR将实现这一目标。该项目有两个目标。第一个目标是扩大对《国家科学、技术和经济政策》核心组成部分的参与。具体来说，在未来五年内，我们将收集和提交NSBPR数据，从200名登记和积极维护参与者与SB在SB计划在儿童医院的威斯康星州和合作的成人诊所在Froedtert纪念路德医院/医学院的威斯康星州。此外，我们将参与数据质量评估，提供未入组NSBPR的合格患者的基本数据，实施评估和传播计划，并参与NSBPR协调委员会。第二个目标是扩大研究活动。具体来说，我们将产生两个研究问题/假设的NSBPR数据，制定研究计划与合作者都在威斯康星州计划和整个NSBPR网站，并传播的结果和翻译的NSBPR分析的结果，以实践。最后，我们将开发和试点测试选择额外的组件，可能是有用的扩展NSBPR。这两项研究包括在这一建议是，“因素预测压力溃疡的儿童和成人脊柱裂”和“测量身体成分的儿童脊柱裂。“我们的网站将继续使用NSBPR（V2）开发的数据收集工具进行数据收集和输入。数据通过基于网络的系统输入，主要是去识别数据提供给疾病控制和预防中心（CDC）。NSBPR数据的分析将由NSBPR中心协调委员会指导，并涉及参与中心的临床医生与CDC的统计学家和科学家合作。本提案中包括一项针对消费者和专业人员的详细宣传计划。威斯康星州研究中心扩大参与本申请中提出的NSBPR，预计将对SB患者的护理产生积极影响。此外，它将为扩大我们对病情及其治疗的理解的研究提供基础。该项目的成果是一个数据库，可用于描述不同环境下的实践差异，促进数据分析，这是临床护理最佳实践的基础，并提高了整个项目的质量。

DESCRIPTION (provided by applicant): Spina Bifida (SB), a group of congenital conditions caused by malformations in the neural tube development early in pregnancy, is one of the most common disabling conditions in our country today. These conditions result in a wide range of spinal cord and central nervous system impairments that affect many body systems. Further complicating the care of persons with SB is the absence of knowledge regarding the prevalence or severity of the potential health issues across clinical programs and the significant variance in health outcomes. The National Spina Bifida Patient Registry (NSBPR) was developed to address this gap. The overall goal of this project is improving the care of individuals living with SB. Our continued active participation in the NSBPR will address this goal. The project has two aims. The first aim is to extend participation in the core components of the NSBPR. Specifically, over the next five years we will collect and submit NSBPR data from 200 enrolled and actively maintained participants with SB in the SB Programs at Children's Hospital of Wisconsin and its collaborating adult clinics at the Froedtert Memorial Lutheran Hospital/Medical College of Wisconsin. Further, we will participate in data quality assessments, provide basic data on eligible patients who are not enrolled in the NSBPR, implement the evaluation and dissemination plans and participate in the NSBPR Coordinating Committee. The second aim addresses expansion of the research activities. Specifically, we will generate two research questions/hypotheses for NSBPR data, develop the research plan with collaborators both within Wisconsin programs and across the NSBPR sites, and disseminate findings and translate the findings of NSBPR analyses to practice. Finally, we will develop and pilot test select additional components that may be useful for expansion of the NSBPR. The two research studies included in this proposal are, "Factors Predicting Pressure Ulcers in Children and Adults with Spina Bifida" and "Measuring Body Composition in Children with Spina Bifida." Our site will continue to use the data collection instrument developed by the NSBPR (V2) for data collection and entry. Data is entered through a web-based system and primarily de-identified data are provided to Centers for Disease Control and Prevention (CDC). Analyses of the NSBPR data will be guided by the Coordinating Committee of NSBPR sites and involve clinicians from the participating sites working with statisticians and scientists from CDC. A detailed dissemination plan for consumers and professionals is included in this proposal. The expanded participation of the Wisconsin site in the NSBPR proposed in this application is expected to have a positive impact on the care of persons with SB. Further, it will provide a foundation for research that expands our understanding of the condition and its treatment. The outcome of this project is a database that can be used to describe variations in practice across settings, facilitate data analyses that s the basis for best practices in clinical care, and improves quality across programs.