# Improving the Urologic Care and Outcomes of Young Children with Spina Bifida in Wisconsin

> **NIH ALLCDC U01** · CHILDREN'S HOSPITAL OF WISCONSIN · 2022 · $25,000

## Abstract

PROJECT SUMMARY/ABSTRACT
In 2014, the Urologic Management to Preserve Initial Renal Function Protocol (UMPIRE Protocol) was
introduced arising from a collaborative, evidence-based effort from experts in urological and renal management
of children with spina bifida. This application represents an effort to continue and expand upon the ongoing
UMPIRE Protocol assessments within the National Spina Bifida Patient Registry. This protocol offers a prime
opportunity to validate and standardize care thresholds for infants and young children with spina bifida.
Furthermore, work is needed to expand the protocol beyond the first 5 years of life. This application proposes
to build upon existing data collection within the UMPIRE Protocol. The Spina Bifida Clinic at the Children’s
Hospital of Wisconsin (CHW) would be an ideal collaborator for the next 5-year grant cycle. The clinic sees on
average at least 11 new infants per year with spina bifida. Further, the Division of Pediatric Urology at CHW
has been actively engaged in participant recruitment and prospective data capture for other urological
diseases, including bladder exstrophy, setting a high standard for approach and recruitment. Therefore, the
infrastructure and volume at CHW will ensure a robust participant enrollment effort throughout the study period.
As an active member of the UMPIRE Protocol, we would propose multiple avenues of further study. First, by
retrospectively validating the urodynamic risk thresholds defined in the first iteration of the protocol and
prospectively assessing renal outcomes based on these risk thresholds, we will assess the clinical impact of
the current UMPIRE Protocol through the first 5 years of implementation. Second, we will assess quality of life
in participants on protocol, focusing caregiver burden for those parents and caregivers of infants and young
children with spina bifida. These assessments are currently underutilized in the spina bifida population and will
provide insight into the burden, including protocol burden, for these families. These will be important additional
outcome measures when assessing utility and potential modifiable elements of the protocol. Finally, using the
information gathered in the above summarized research approach, we will identify opportunities for
improvements within the protocol. These improvements will include (a) potential additions or modifications to
improve clinical outcomes in high risk children; (b) potential subtractions or omissions to the protocol to
minimize caregiver burden and cost, when such studies would be felt to lack additive value; and (c) extend the
protocol to children aged 6–10, with focus on continence outcomes and surgical procedures in addition to the
aforementioned renal outcomes.

## Key facts

- **NIH application ID:** 10441127
- **Project number:** 5U01DD001239-04
- **Recipient organization:** CHILDREN'S HOSPITAL OF WISCONSIN
- **Principal Investigator:** Elizabeth B Roth
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2022
- **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/10441127

## Citation

> US National Institutes of Health, RePORTER application 10441127, Improving the Urologic Care and Outcomes of Young Children with Spina Bifida in Wisconsin (5U01DD001239-04). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10441127. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*