Primary Children's Medical Center Spina Bifida Patient Registry

初级儿童医疗中心脊柱裂患者登记处

• 批准号: 8499037
• 负责人: PAULA RUTH PETERSON
• 金额: $ 3.98万
• 依托单位: IHC HEALTH SERVICES, INC.
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-09-01 至 2014-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8499037
• 关键词: Primary; Children; Medical; Center; Spina

DESCRIPTION (provided by applicant): SB is a common congenital defect of the spine occurring early in gestation. The use of folate supplementation and mandatory fortification of grains in the US since 1998 has demonstrated a decrease in the prevalence of SB in some areas20. In Utah, there has actually been an increase in the prevalence of all neural tube defects (NTD's) since 2003, and no reduction in SB1. Multidisciplinary health care programs designed to meet the complex needs of individuals with SB continue to be needed with greater understanding of research needs to direct best practice and improve the lives of individuals with SB. Few prospective studies have been carried out to make strong conclusions for recommendations for research or practice. This project, National SB Patient Registry Demonstration Project, seeks to advance the understanding of the influence of demographic factors and clinical interventions on outcome for patients seen in a number of clinics with diverse populations. The registry will be used to identify areas for prospective research to direct best practices and improve the lives of individuals with SB. We are positioned in Utah to participate in this project because of our: 1) Comprehensive, statewide surveillance system for SB (Utah Birth Defects Network), 2) Centralized health care for individuals with SB (SB Program, Primary Children's Medical Center), 3) Position as a pediatric tertiary facility of a major health care agency (Intermountain Health Care), which provides robust datasets for linkage. Our goal is to implement the standardized data collection with 125 children treated in the SB Clinic in Utah in 2009, in order to contribute to the understanding of care for patients with SB and identify areas of future research. These patients will be seen in year 2 and year 3. The opportunity to be involved in the project will be offered to all patients. The specific aims of this proposal are: 1. Implement standardized data collection process in the National SB Patient Registry; 2. Conduct data collection; 3. Implement an analytical plan; 4. Participate in a Coordinating Committee with other awardees; and 5. Develop a plan for integrating data findings into clinical practice.

描述（由申请人提供）：SB是妊娠早期发生的脊柱的常见先天性缺陷。自1998年以来，美国谷物的补充和强制性强化的使用表明，某些地区SB的患病率降低了。在犹他州，自2003年以来，所有神经管缺陷（NTD）的患病率实际上有所增加，而SB1的患病率也没有降低。旨在满足SB的个人的复杂需求的多学科医疗保健计划继续需要更深入地了解研究的需求，以指导最佳实践并改善SB患者的生活。很少有前瞻性研究为研究或实践的建议做出有力的结论。该项目是国家SB患者登记示范项目，旨在促进对人口统计学因素的影响以及对许多人口多样的诊所中患者的临床干预措施的影响。该注册表将用于确定前瞻性研究领域，以指导最佳实践并改善SB个人的生活。由于我们的：1）SB（犹他州出生缺陷网络）的全面，全州范围内的监视系统，2）针对SB（SB计划，小学儿童医疗中心）的集中卫生保健，3）位置为大量保健机构（InterMountain Carey Care）提供了可靠的链接，我们的位置是犹他州（犹他州出生缺陷网络），我们被定位为参加该项目。我们的目标是在2009年在犹他州SB诊所接受治疗的125名儿童实施标准化的数据收集，以便有助于理解SB患者的护理并确定未来研究的领域。这些患者将在2年级和3年级中看到。参与该项目的机会将提供给所有患者。该提案的具体目的是：1。在国家SB患者注册表中实施标准化的数据收集过程； 2。进行数据收集； 3。实施分析计划； 4。与其他获奖者一起协调委员会；和5。制定将数据结果集成到临床实践中的计划。