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

University Of Pittsburgh At Pittsburgh, Pittsburgh PA

Investigators

Linked publications & trials

Abstract

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.