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

> **NIH ALLCDC U01** · UNIVERSITY OF ALABAMA AT BIRMINGHAM · 2023 · $25,000

## Abstract

Project Summary- Component C
 The urologic management of the newborn and young child with spina bifida is currently based on
dogma and “expert opinion”, a significant limitation when it comes to determining “best practice” standards. It is
accepted that >90% of newborns with spina bifida have normal kidney function and normal appearing kidneys.
If unattended; approximately 50% encounter some degree of kidney compromise by the age of 5 years. There
is a need for standardization of the urologic care of the newborn and young child with spina bifida using a
management protocol that will protect kidney function and control hostile bladder function. The proposed
Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida
(UMPIRE Protocol) from birth through the age of 10 years provides the opportunity to develop an evidenced-
based model for the care of children with a neurogenic bladder secondary to spina bifida. The desired
outcome of the protocol is to preserve and protect normal kidney function while utilizing resources in a cost
efficient fashion.
 The previous funding cycle provided the framework for the UMPIRE protocol and described the
treatment regimen for the child with spina bifida from birth through the first 5 years of life. Continuing to follow
these children for the next 5 years, until age 10, will be critically important in validating the success of the
protocol as written. The University of Alabama at Birmingham (UAB) has enrolled 35 patients in the UMPIRE
project which represents 100% of patients born with spina bifida at our site.
 Throughout the duration of the protocol, testing of bladder function is undertaken along with
assessment of kidney function and appearance. Data is collected on an ongoing basis that is sent
electronically to the CDC for analysis. Changes to the protocol may occur when it becomes apparent changes
would improve kidney health.
 A successful outcome has universal appeal and the potential to standardize the care of children with
neurogenic bladder dysfunction across all neuropathic disorders of which spina bifida makes up the greatest
percent based on etiology. This becomes exceedingly important not only for the large centers caring for
children with a neurogenically abnormal bladder but also for smaller centers that don’t have the patient volume
that would allow them to make any reasonable predictions on management based on their own data. In
addition to continuing to provide data points on the 35 patients currently enrolled, UAB also intends to continue
patient enrollment of all newborns born with spina bifida at our site. Finally, UAB has proposed a project to
determine the incidence of bladder hostility in patients enrolled in the National Spina Bifida Patient Registry
prior to the beginning of the UMPIRE protocol and compare that with patients enrolled in the UMPIRE.

## Key facts

- **NIH application ID:** 10649554
- **Project number:** 5U01DD001236-05
- **Recipient organization:** UNIVERSITY OF ALABAMA AT BIRMINGHAM
- **Principal Investigator:** David B Joseph
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2023
- **Award amount:** $25,000
- **Award type:** 5
- **Project period:** 2019-09-01 → 2024-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10649554

## Citation

> US National Institutes of Health, RePORTER application 10649554, Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida- Component C (5U01DD001236-05). Retrieved via AI Analytics 2026-05-21 from https://api.ai-analytics.org/grant/nih/10649554. Licensed CC0.

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