CHLA Spina Bifida Patient Registry Project
Project Description
Healthcare professionals must share knowledge and coordinate treatment to ensure quality care in children with spina bifida (Sandler, 2004; Mitchell, et al., 2004).
The Centers for Disease Control and Prevention (CDC) National Spina Bifida Patient Registry (NSBPR) at Children’s Hospital Los Angeles (CHLA) is aimed at improving the care of individuals with spina bifida in the United States. The goal of this project is to participate in testing the utilization of a standardized registry tool for collecting data on patients with spina bifida at CHLA. By studying the health of this population, specifically those children and youth who attend specialized spina bifida clinics, interventions and strategies can be identified to improve access to comprehensive, evidence based, cost effective care, identify areas of future research, and ultimately, improve the quality of life of individuals living with the condition.
The overall goal for this project is the creation of a universal data collection system for providers caring for children with spina bifida to standardize and improve care for these individuals nationally. This project allows for the identification of innovations that yield the best outcomes, provides a means to share best practices and serves as a platform for multi-site research. Data collected by the Registry network provides researchers and clinicians with a robust database to investigate the health status of the population and our aim is to develop and implement a research plan in a specific area of interest. Treatments and outcomes can be compared by clinic, population and geographic region. Since the population at CHLA is unique among spina bifida centers in that 88% is Hispanic (NSBPR Webtracker data, 2013), important information can be obtained about the needs of this specific population.
Important Things to Know
- Spina Bifida is the most common permanently disabling birth defect in the United States.1
- Spina Bifida happens when a baby is in the womb and the spinal column does not close all of the way.1
- A Spina Bifida Patient Registry is defined as a system for the collection and maintenance of longitudinal data in a structured record including demographics, interventions, and outcomes for specific persons with spina bifida.
For more information about Spina Bifida and the National Spina Bifida Patient Registry please visit the CDC website.
Additional information
Kathryn Smith, DrPH, RN, Principal Investigator
Alexander van Speybroeck, MD, MPH, FAAP, Co-Investigator
Cecily L. Betz, PhD, RN, FAAN, Co-Investigator
Steve Kim, MD, MSCE, Co-Investigator
Kristy Macias, BA, Project Coordinator
Project Duration: 2008 – 2019
Funding: Grant
Collaborator: CDC Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida
