# Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida- Component B

> **NIH ALLCDC U01** · UNIVERSITY OF ALABAMA AT BIRMINGHAM · 2023 · $80,000

## Abstract

Project Summary
The University of Alabama at Birmingham (UAB) has been dedicated to the National Spina Bifida Patient
Registry (NSBPR) since its inception. The CDC recognized the need and benefits of a registry to promote
advances in all areas of health care for individuals with spina bifida and established the NSBPR. The goal of
this initiative was to improve the quality of healthcare as well as to gain an understanding of the demographics
and characteristics of individuals with spina bifida.
UAB is committed to continue the collection of longitudinal data on children and adults with spina bifida seen in
our clinics. These data will be used to promote quality of care by determining best practices through comparing
differences in interventions and outcomes among participating clinics. UAB has a unique contribution in that
there is both a pediatric and adult multidisciplinary clinic. The pediatric population is more than 500 patients
and the adult population is just over 200 patients. Many of these patients have been included in the NSBPR
since the beginning and continuing to provide longitudinal data on them is critical to understanding how
treatment inventions impact patients over time.
 UAB has been successful in the previous funding cycles of the NSBPR in terms of patient enrollment, timely
reporting, and research presented and published. Two of the major neurosurgical papers produced using
NSBPR data were published from UAB. There have also been 17 projects published with contribution from
UAB using local and aggregate NSBPR data.
If awarded, during the next funding cycle we intend to complete projects using both local and aggregate
NSBPR data. Local projects include 1) the assessment of the contribution of baseline sleep studies in patients
with and without symptoms for sleep disordered breathing (SDB); 2.) to study the adult population to describe
their need for surgical intervention after transitioning to adult care. Projects with aggregate data include 1.) to
study SDB using the new NSBPR sleep variables; 2.) to investigate the impact that body mass index plays in
ambulation changes over time and 3.) to coordinate a study on the aggregate NSBPR cohort with closed
dysraphisms that have not previous undergone surgical intervention. This robust list of projects will provide a
great contribution to the understanding of the care of individuals with spina bifida.

## Key facts

- **NIH application ID:** 10650193
- **Project number:** 5U01DD001237-05
- **Recipient organization:** UNIVERSITY OF ALABAMA AT BIRMINGHAM
- **Principal Investigator:** Jeffrey P Blount
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2023
- **Award amount:** $80,000
- **Award type:** 5
- **Project period:** 2019-09-01 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10650193

## Citation

> US National Institutes of Health, RePORTER application 10650193, Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida- Component B (5U01DD001237-05). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10650193. Licensed CC0.

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