Research and Tracking

At a glance

  • To better understand health issues and needs among people with spina bifida, CDC collects data through the National Spina Bifida Patient Registry.
  • CDC also leads research efforts to understand bladder and kidney issues for people with spina bifida.
  • CDC tracks how frequently birth defects, including spina bifida, occurs through state birth defects tracking programs.
Kids with spina bifida smiling near an indoor pool

National Spina Bifida Patient Registry

CDC funds and manages the National Spina Bifida Patient Registry (NSBPR), which was established in 2008. Data gathered in the Registry come from children and adults who attend spina bifida clinics. These data document the care they receive and the outcomes of that care. Once analyzed and published, Registry data can lead to improvements in the care and treatment of spina bifida.

Purpose of NSBPR

The NSBPR collects the scientific data needed to evaluate existing medical services for spina bifida patients. It also provides the framework to improving the quality of care received at spina bifida clinics nationwide.

NSBPR Objectives

The NSBPR collects comparative data on patient demographics, treatment, and outcomes (bowel and bladder continence, mobility, skin problems). The data is collected for individuals who attend spina bifida clinics in the United States. NSBPR components include

  • Developing standards of care and treatment for patients with spina bifida
  • Revising standards of care and treatment when necessary
  • Sharing evidence-based information between clinicians across the country
  • Implementing benchmarks to improve care in spina bifida clinics
  • Identifying centers that provide the most beneficial care to patients

More information

Data charts on laptop

Findings from the National Spina Bifida Patient Registry

The NSPBR provides valuable information for patients, their families, and healthcare providers.
U.S. Map showing spina bifida clinic locations

Spina Bifida Clinic Map

Map showing Spina Bifida clinic locations in the United States.
NBSPR flyer

NSBPR Flyer

This flyer highlights the National Spina Bifida Patient Registry.

Urologic protocol for young children

Many babies born with spina bifida have healthy kidneys at birth.1 However, they may develop urinary tract infections or kidney failure at a younger age than those without spina bifida.2 To monitor how well the bladder and kidneys are working in infants and children with spina bifida, CDC and other experts developed the Urologic Management to Preserve Initial Renal Function (UMPIRE) protocol.

The regular monitoring and testing developed through the UMPIRE project helps identify kidney disease earlier. Early detection may keep kidney disease from getting worse.

History

The UMPIRE protocol launched in 2015. Researchers hope to follow infants enrolled in UMPIRE until they are 10 years of age. In the meantime, UMPIRE adds more newborns with myelomeningocele to the program. The more years of data researchers have, the better they can track the long-term kidney health of these babies.

As UMPIRE continues, researchers will publish findings on the best standard of care to protect the kidneys of infants and young children with spina bifida.

Research

Aims for UMPIRE data include:

  1. Identify whether infants with myelomeningocele routinely need preventive antibiotics to avoid urinary tract infections
  2. Determine the characteristics to help identify which children born with myelomeningocele are likely to have kidney problems

UMPIRE design‎

Read more about UMPIRE's design and methodology.
Design and Methodological Consideration of the Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida

Birth defects tracking and research

Accurately tracking birth defects, including spina bifida, and analyzing the collected data is a first step in preventing them. CDC uses tracking and research to identify causes, find opportunities for prevention, and improve the health of those living with these conditions.

Keep Reading: Birth Defects Tracking
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Content Source:
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
  1. Tanaka ST, Paramsothy P, Thibadeau J, Wiener JS, Joseph DB, Cheng EY, et al.Baseline urinary imaging in infants enrolled in Urologic Management to Preserve Initial Renal Function (UMPIRE) protocol for children with spina bifida.J Urol. 2019 Feb 5.
  2. Ouyang L, Bolen J, Valdez R, Joseph D, Baum MA, Thibadeau J.Characteristics and survival of patients with end stage renal disease and spina bifida in the United States renal data system.J Urol. 2015 Feb;193(2):558-64.