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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.

Findings from the National Spina Bifida Patient Registry

For the first time, the Centers for Disease Control and Prevention (CDC) reports findings from the National Spina Bifida Patient Registry. The Registry collects information to better understand the association between surgeries or medical procedures and health outcomes.

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.

Frequently Asked Questions

What information is included in the Registry?
Sections of the Registry focus on:

  1. Past surgeries
  2. Continence
  3. Mobility
  4. Type of insurance
  5. Employment status
  6. Education attained

Why isn’t my spina bifida clinic in the Registry?
Clinics are selected through a competitive government grant process. Funds available to CDC limit the number of clinics in the Registry. Clinics must meet specific requirements, which include the number of new spina bifida patients they see each year, and their staffing capacity. Many of the clinics in the Registry are affiliated with hospitals committed to spina bifida research and care.  

How can I be included in the Registry?
Only patients who attend clinics that are part of the Registry are eligible to be included. The Registry is not open to the public.

Which clinics are in the Registry?
Scroll down to see the map of Registry clinics.

 

U.S. Map: Geographic distribution of multidisciplinary clinics in National Spina Bifida Registry Project Seattle WashingtonPortland, OregonSalt Lake City, UtahOakland, CaliforniaLos Angeles, CaliforniaDenver, ColoradoMilwaukee, WisconsinDetroit MichiganChicago, IllinoisColumbus, OhioIndianapolis, IndianaHartford, ConnecticutPittsburgh, PennsylvaniaHershey, PennsylvaniaCinncinati, OhioDurham, North CarolinaBirmingham, Alabama

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Future Plans for the Registry

Currently there are 17 funded 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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