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

描述(申请人提供)：脊柱裂(Spina Bifida，SB)是一组因怀孕早期神经管发育畸形而导致的先天性疾病，是当今我国最常见的致残性疾病之一。这些情况会导致广泛的脊髓和中枢神经系统损伤，影响到许多身体系统。使SB患者的护理进一步复杂化的是，缺乏关于临床计划中潜在健康问题的流行率或严重性的知识，以及 健康结果。国家脊柱裂患者登记处(NSBPR)就是为了解决这一差距而开发的。该项目的总体目标是改善对与患者生活在一起的个人的护理 某人。我们将继续积极参与NSBPR，以实现这一目标。该项目有两个目标。第一个目标是扩大对NSBPR核心组成部分的参与。具体地说，在接下来的五年里，我们将收集并提交200名在威斯康星州儿童医院及其在弗罗伊德特纪念路德医院/威斯康星州医学院与SB合作的成人诊所参加SB项目的注册和积极维护的参与者的NSBPR数据。此外，我们将参与数据质量评估，提供未参加NSBPR的符合条件的患者的基本数据，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。具体地说，我们将为NSBPR数据生成两个研究问题/假设，与威斯康星州计划内和NSBPR网站上的合作者一起制定研究计划，并传播研究结果并将NSBPR分析的结果转化为实践。最后，我们将开发和试运行可能对扩展NSBPR有用的其他组件。这项提案中包括的两项研究是：“脊柱裂儿童和成人压疮的预测因素”和“测量脊柱裂儿童的身体成分”。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录入。数据通过基于网络的系统输入，主要是将未识别的数据提供给疾病控制和预防中心(CDC)。NSBPR数据的分析将由NSBPR站点协调委员会指导，参与站点的临床医生将与CDC的统计学家和科学家一起工作。这项提案包括了针对消费者和专业人士的详细传播计划。本申请中提出的威斯康星州扩大参与NSBPR的建议，预计将对SB患者的护理产生积极影响。此外，它将为扩大我们对这种情况及其治疗的理解的研究提供基础。这个项目的成果是一个数据库，可以用来描述不同环境下的实践变化，促进数据分析，使S成为临床护理最佳实践的基础，并提高项目的质量。

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.