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

描述（由申请人提供）：本提案的目的是继续匹兹堡大学参与国家脊柱裂患者登记（NSBPR）。匹兹堡大学自2011年以来一直是一个受资助的注册网站。我们在该奖项中提出了一个研究子项目，解决了三个目标：1）更全面地描述脊柱裂患者的神经和功能分类，2）确定哪些额外的变量对行走和转移能力有显著贡献，3）开发和验证“脊柱裂损伤量表”，可用于准确量化脊柱裂患者的运动和感觉缺陷。我们提出的证据表明，我们的网站是一个理想的候选人继续作为参与者在NSBPR，因为几个独特的品质，使我们的工作创新。我们有大量的儿童和成人脊柱裂患者，并且已经有了继续这项工作的基础设施。我们也有使用NSBPR数据进行试点研究的经验，并通过多个联邦资助的脊柱裂人群的流动性和健康结果的研究项目广泛发表。

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.