Comp B National Spina Bifida Patient Registry at Vanderbilt Children's Hospital Component

NIH RePORTER · ALLCDC · U01 · $68,000 · view on reporter.nih.gov ↗

Abstract

PROJECT SUMMARY Advances in medical care have increased longevity for babies born with spina bifida, the most common permanently disabling birth defect in the United States. However, long-term health outcomes are limited, practice patterns vary, and best practices are not well defined. The Spina Bifida Program at Monroe Carell Jr. Children's Hospital at Vanderbilt (MCJCHV) evaluates over 250 patients with spina bifida each year. The neurosurgery, orthopaedics, and urology programs at MCJCHV have set the following goals for this study: 1) to approach each eligible patient in our program for enrollment, 2) to contribute longitudinal data on health status, clinical care, and outcomes for consented patients to the NSBPR over the five year study period, and 3) to evaluate NSBPR data to answer hypothesis-driven questions about outcomes in spina bifida. The PI along with the clinical research coordinator will ensure quality control of data submitted to the CDC. The PI and the Spina Bifida Program have a demonstrated record of productive research with the NSBPR and other national databases. Published results from this study will help to inform best practice clinical guidelines for spina bifida.

Key facts

NIH application ID
9988316
Project number
5U01DD001235-02
Recipient
VANDERBILT UNIVERSITY MEDICAL CENTER
Principal Investigator
Stacy T Tanaka
Activity code
U01
Funding institute
ALLCDC
Fiscal year
2020
Award amount
$68,000
Award type
5
Project period
2019-09-01 → 2024-08-31