Comp B-National SB Patient Registry at the University of Pittsburgh

Comp B-匹兹堡大学国家 SB 患者登记处

• 批准号: 8821191
• 负责人: BRAD E. DICIANNO
• 金额: $ 6万
• 依托单位: UNIVERSITY OF PITTSBURGH AT PITTSBURGH
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-01 至 2019-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8821191
• 关键词: Comp; National; SB; Patient; Registry

DESCRIPTION (provided by applicant): The objective of this proposal is to continue participation of the University of Pittsburgh in the National Spina Bifida Patient Registry (NSBPR). The University of Pittsburgh has been a funded registry site since 2011. We propose a research subproject within this award that addresses three aims: 1) Describe more fully the neurological and functional classification of individuals with spina bifida, 2) Determine which additional variables contribute significantly to ambulatory and transfer ability, and 3) Develop and validate a "Spina Bifida Impairment Scale" that can be used to accurately quantify motor and sensory deficits in individuals with spina bifida. We present evidence that our site is an idea candidate to continue as a participant in the NSBPR because of several unique qualities that make our work innovative. We have a large pediatric and adult spina bifida population and the infrastructure already in place to continue this work. We also have prior experience conducting pilot research using data from the NSBPR and have published extensively via multiple federally funded research projects on mobility and health outcomes in the spina bifida population.

描述(由申请人提供)：这项提案的目标是继续让匹兹堡大学参与国家脊柱裂患者登记系统(NSBPR)。自2011年以来，匹兹堡大学一直是一个受资助的注册网站。我们在这个奖项中提出了一个研究子项目，旨在解决三个目标：1)更全面地描述脊柱裂患者的神经和功能分类；2)确定哪些额外变量对行走和转移能力有显著影响；3)开发和验证可用于准确量化脊柱裂患者运动和感觉障碍的“脊柱裂损伤量表”。我们提出的证据表明，我们的网站是一个理想的候选者，继续作为NSBPR的参与者，因为几个独特的品质，使我们的工作具有创新性。我们有大量的儿童和成人脊柱裂人口，并且已经建立了基础设施来继续这项工作。我们以前也有使用NSBPR的数据进行试点研究的经验，并通过多个联邦资助的研究项目广泛发表了关于脊柱裂人口的流动性和健康结果的研究成果。