CDC National Spina Bifida Urologic/Renal Management Protocol at CHLA

Project Description

It is estimated that 70,000 people in the United States are currently living with spina bifida. The majority of patients with spina bifida experience urologic complications related to their condition, including incontinence and possibly renal damage. Over the past several decades, significant advancements have been made in our understanding of the causes of neurogenic bladder dysfunction in children, which has allowed for earlier, more proactive therapeutic interventions aimed at the prevention of renal deterioration.

The Centers for Disease Control and Prevention (CDC) National Urologic Management Protocol for the Preservation of Renal Function (UPPF) is aimed at the implementation and evaluation of best practices in the Newborn/Young Child with Spina Bifida. The goal of the protocol is to develop standardized and effective urologic management in infants and young children with the myelomeningocele (MMC) type of spina bifida, to preserve kidney function, lay the groundwork for long term continence and optimize long term health and well-being.

This project is innovative as it is a long term prospective study to test and evaluate the use of a standardized urologic management protocol for patients with spina bifida, beginning in the neonatal period up through 5 years of age. The data gathered through this project will provide researchers and clinicians with a robust database to test a systematic urologic protocol and to examine the long term urologic status of the population, enabling the development of evidence based clinical interventions to improve care outcomes and quality of life.

Important Things to Know

• Renal failure has historically been the leading cause of mortality in patients with myelomeningocele.
• Contemporary management with proactive urodynamic investigation, clean intermittent catheterization, antibiotic prophylaxis and anticholinergic therapy in children with MMC has shown a marked reduction in the rate of overall renal parenchymal damage.

Additional Information

Kathryn Smith, DrPh, RN, Principal Investigator

Steve Kim, MD, MSCE, Co-Investigator

Alexander van Speybroeck, MD, MPH, FAAP, Co-Investigator

Cecily L. Betz, PhD, RN, FAAN, Co-Investigator

Kristy Macias, BA, Project Coordinator

Project Duration: 2014 – 2019

Funding: Grant

Collaborator: CDC Research Approaches to Improve the Care and Outcomes of People Living with Spina Bifida