Centers for Disease Control and Prevention National Spina Bifida Patient Registry

疾病控制和预防中心国家脊柱裂患者登记处

• 批准号: 10349411
• 负责人: Richard C. Adams
• 金额: $ 8.07万
• 依托单位: UT SOUTHWESTERN MEDICAL CENTER
• 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/10349411
• 关键词: Centers; Disease; Control; Prevention; National

PROJECT SUMMARY Delivery of holistic care to persons with spina bifida/myelomeningocele remains a complex challenge to clinicians in the field, researchers in academic settings, and public health agencies charged with assuring best practice standards. The National Spina Bifida Patient Registry is uniquely positioned to directly support these complex challenges. The leadership, site participants, and individuals who comprise the entirety of the Registry are experts in the field; the structure is well defined, rigorous, yet adequately flexible for ready change when shifts are needed for quality purposes; and there are continuing outcome products (publications, reports, etc.) that reflect the value of the enterprise. The Spina Bifida Program at Texas Scottish Rite Hospital for Children (TSRH) in Dallas, TX, an active participant in the Registry, continues to expand both in numbers of families served and in the broad spectrum of services and programs available for pediatric patients. For over 25 years, there have been – at any time along the way – about 850 to 900 families actively engaged in the Spina Bifida Program Clinics at TSRH. While the majority of these patients come from about a 100-mile radius from the hospital, the Program serves children throughout Texas: El Paso to Dallas; Lubbock to Austin. The diversity of the population is reflective of that in the North Texas region: a slight majority of non-Hispanic white, a near- majority with Hispanic background, and about 10% Asian or Black background. A slight majority carry commercial insurance; a near majority have Medicaid; and a minority carry both. The parents represent a wide socio-economic and educational diversity. The diverse demographic population allows for large, balanced cohorts for both clinical research and reports. Because of the historically unique system of financial support to families by the Hospital and the nature of the services provided, the longitudinal follow-up of patients from birth to adulthood remains remarkably high. Willingness to participate in clinical studies remains high as well. This has allowed the Program to conduct longitudinal research in addition to robust cross-sectional studies. To this point, the Hospital has been able to support to some degree the activities specific to the demands of the Registry. The TSRH Spina Bifida Program can better maximize its potential as a Registry participant, expand the activities of the Program, and advance new initiatives with funding support from the Registry. We are presently involved in two specific initiatives for outcomes studies; funding support should allow greater time and focus of our present research coordinator for added research projects. Through this project we propose the following aims: 1) Continue to collect longitudinal data on individuals with spina bifida in order to identify variation among the NSBPR clinics, 2) Participate in and implement data quality strategies in order to ensure reliability across clinics, and 3) Collaborate with other sites to develop research projects addressing scientific gaps in the spina bifida population.

项目摘要 为脊柱裂/脊髓脊膜膨出患者提供整体护理仍然是一项复杂的挑战， 该领域的临床医生，学术环境中的研究人员，以及负责确保最佳 实践标准。国家脊柱裂患者登记处是唯一的定位，直接支持这些 复杂的挑战。领导层、现场参与者和构成整个登记处的个人 是该领域的专家;该结构定义明确，严谨，但足够灵活，可以随时进行更改， 为质量目的需要转变;有持续的成果产品（出版物、报告等） 这反映了企业的价值。德克萨斯州苏格兰儿童医院的脊柱裂项目 （TSRH）在达拉斯，得克萨斯州，一个积极的参与者在登记处，继续扩大双方的家庭数量 服务，并在广泛的服务和计划提供给儿科患者。25年来 在沿着的任何时候，大约有850到900个家庭积极参与脊柱裂治疗 在TSRH计划诊所。虽然这些患者中的大多数来自距离中心约100英里的半径， 该计划为德克萨斯州各地的儿童提供服务：埃尔帕索到达拉斯;拉伯克到奥斯汀。之多样 人口反映了北德克萨斯州地区的情况：非西班牙裔白色人略占多数， 大多数是西班牙裔背景，大约10%是亚裔或黑人背景。微弱多数票通过 商业保险;几乎大多数人有医疗补助;少数人两者都有。父母代表了一个广泛的 社会经济和教育多样性。多样化的人口结构允许大规模、平衡的 临床研究和报告的队列。由于历史上独特的财政支持制度， 家庭由医院和提供的服务的性质，纵向跟踪病人从出生 到成年的比例仍然非常高。参与临床研究的意愿也很高。这 允许该计划进行纵向研究，除了强大的横截面研究。本 在这一点上，医院能够在一定程度上支持书记官处具体要求的活动。 TSRH脊柱裂计划可以更好地最大限度地发挥其作为登记研究参与者的潜力， 并在注册处的资助下推行新措施。我们目前正在参与 在两项具体的成果研究倡议中;资金支持应使我们有更多的时间和重点， 现任研究协调员，负责新增的研究项目。通过该项目，我们提出以下目标： 1)继续收集脊柱裂患者的纵向数据，以确定 NSBPR诊所，2）参与并实施数据质量策略，以确保诊所之间的可靠性， 3）与其他研究中心合作，开发研究项目，填补脊柱裂的科学空白 人口