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）：该提案的目的是继续参与匹兹堡大学国家脊柱裂野患者登记处（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与脊柱裂。我们提供的证据表明，我们的网站是NSBPR参与者继续担任参与者的想法候选人，因为几种独特的品质使我们的工作创新。我们有大量的儿科和成人脊柱裂的人群，以及已经建立的基础设施来继续这项工作。我们还具有使用NSBPR数据进行试点研究的先前经验，并通过多个联邦资助的研究项目广泛发表了有关脊柱裂的人口的流动性和健康结果的研究项目。