# Oregon Spina Bifida Registry Project-Comp B

> **NIH ALLCDC U01** · OREGON HEALTH & SCIENCE UNIVERSITY · 2021 · $80,000

## Abstract

PROJECT SUMMARY/ABSTRACT
Spina bifida is the most common permanently disabling birth defect in the United States
and requires complex and long-term medical care. Enhanced understanding of care
practices of spina bifida programs and about health outcomes will improve outcomes
and quality of life experiences for persons living with spina bifida. Evidence from other
complex and chronic conditions has shown that a National Spina Bifida Patient Registry
allows for comparison of outcome data among care centers and identification of
strategies to improve outcomes. Assessment by the Spina Bifida Association in
collaboration with other groups identified need for a national infrastructure to support
clinical research and a systematic approach to improving quality of care for people with
spina bifida. This project will facilitate continued implementation and refinement of a
national spina bifida patient registry. OHSU has a long history of addressing systems of
care for people with spina bifida, including participation in the national registry efforts
since their inception, and this project builds on experience that includes systematic
collection and evaluation of clinical data.
This project contributes to building the clinical evidence base about current health
practices in spina bifida care and health outcomes; this evidence is needed to aid
development and adoption of national standards of care for people with spina bifida that
can be applied to reduce disparities and improve health outcomes across clinics,
populations, and regions of the US. The primary objective of this application is to extend
participation in the National Spina Bifida Patient Registry via utilization of the
standardized registry tool to collect data from patients with spina bifida. A complete
source for spina bifida patient data will make it possible to compare treatments and
outcomes of populations and identify areas for future research to guide best clinical
practices and improve the lives of persons living with spina bifida. Continued
participation in the project will emphasize ongoing collection of data on participating
patients. Further, project personnel will collaborate with professionals at other sites
participating in the registry to analyze obtained data and disseminate findings.

## Key facts

- **NIH application ID:** 10214446
- **Project number:** 5U01DD001275-03
- **Recipient organization:** OREGON HEALTH & SCIENCE UNIVERSITY
- **Principal Investigator:** KURT A FREEMAN
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2021
- **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/10214446

## Citation

> US National Institutes of Health, RePORTER application 10214446, Oregon Spina Bifida Registry Project-Comp B (5U01DD001275-03). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10214446. Licensed CC0.

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