About the National Spina Bifida Patient Registry

Two boys in wheelchairs getting ready to go in the pool

CDC programs and research improve the quality of life and encourage full participation at every age for those with spina bifida. In 2006, a survey of spina bifida clinics across the United States conducted by the Spina Bifida Association (SBA) identified differences in staffing, delivery of services, and patient care. To address these gaps, SBA’s Professional Advisory Council advocated for the establishment of the National Spina Bifida Patient Registry (NSBPR), to collect the scientific data needed to evaluate existing medical services for spina bifida patients. Established in 2008, the registry provides the framework for a systematic approach to improving the quality of care received at spina bifida clinics nationwide.

The CDC funds and manages the NSBPR. Progress toward project milestones is monitored, and experts are consulted to ensure the scientific data are useable and valuable to researchers, health care professionals, and families affected by spina bifida.

Registry Components

NSBPR objectives are to:

Collect continual comparative data on patient demographics, treatment, and outcomes for children, adolescents, and adults 21 years of age or older, who attend spina bifida clinics in the United States.

Develop and revise (as necessary) standards of care and treatment best practices for patients with spina bifida.
Share evidence-based information between physicians across the country, advancing best practices for the secondary conditions of spina bifida, such as paralysis, neurogenic bladder and bowel, and hydrocephalus.
Implement benchmarks to improve care in spina bifida clinics.
Identify centers that provide the most beneficial care to patients.
Evaluate the clinical cost-effectiveness of spina bifida treatment.

Data Collection Methods

The first time a new patient visits a clinic in the registry, clinic staff record their responses to a series of general questions. Each subsequent year they visit, patients are asked the same series of detailed questions to obtain continual data about their condition over time. This information is entered into the spina bifida Electronic Medical Record (EMR), which has been designed specifically for use in spina bifida clinics. The EMR ensures that all clinics provide data in a standardized format that can be analyzed. All data are collected anonymously. Once the data are collected and entered, they are transmitted to a central database at CDC for analysis. By comparing the data from each clinic, researchers can identify the most beneficial care for patients, and areas of clinical practice where additional research is needed.

Future Plans for the Registry

As of 2011, there are 17 spina bifida clinics participating in the data collection initiative. Analysis of data is ongoing, as are revisions to the registry questions, based on feedback from clinicians and the registry’s data coordinating committee.

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