# Component B. National Spina Bifida Patient Registry (NSBPR)

> **NIH ALLCDC U01** · CHILDREN'S HOSPITAL OF LOS ANGELES · 2020 · $68,000

## Abstract

Abstract
The goal of this project is to continue to participate in the National Spina Bifida Patient
Registry. This proposal aims to: 1) collect data for inclusion in the SB Registry including
health status, interventions and outcomes, to better understand the needs of the
population, improve the quality of care and optimize health; 2) contribute to the body of
knowledge about the SB population through the conduct of high quality, collaborative
research, utilizing existing Registry data; and 3) improve the clinical care and outcomes
for patients with spina bifida cared for in the CHLA Spina Bifida Program. Spina bifida
affects about 1600 of the approximately 3.8 million babies born in the country each
year; an estimated 160,000 people in the United States are currently living with the
condition (myelomeningocele, lipomeningocele and meningocele). In
myelomeningocele, typical impairments include hydrocephalus, Chiari II malformation,
neurogenic bowel and/or bladder resulting in incontinence, muscle weakness and lack
of sensation in lower extremities, and cognitive dysfunction. These impairments can
have significant impact on day-to-day living and can interfere with school, work and
other community activities. Given the myriad symptoms that can be present in SB, the
condition can have a significant impact on quality of life. The National Spina Bifida
Patient Registry is an important vehicle for understanding and preventing primary and
secondary conditions associated with SB, potentially leading to improved health,
reduced health care costs and improved quality of life. Research resulting from the use
of Registry data can help to identify best practices that can be universally adopted by
the community of SB clinics, thereby leading to improved care for all patients.
Achievement of project goals will serve to increase scientific knowledge about the
population through continued enrollment of patients, and improve clinical care resulting
from identification of best practices through robust research efforts. Our goal is to
improve the care, quality of life, long term health and full inclusion in all elements of
community life for this important population.

## Key facts

- **NIH application ID:** 9996428
- **Project number:** 5U01DD001274-02
- **Recipient organization:** CHILDREN'S HOSPITAL OF LOS ANGELES
- **Principal Investigator:** Kathryn A. Navarette Smith
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2020
- **Award amount:** $68,000
- **Award type:** 5
- **Project period:** 2019-09-01 → 2021-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9996428

## Citation

> US National Institutes of Health, RePORTER application 9996428, Component B. National Spina Bifida Patient Registry (NSBPR) (5U01DD001274-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/9996428. Licensed CC0.

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