National Spina Bifida Data Collection Initiative

(also known as the national Spina Bifida Patient Registry)

The data collection initiative (also known as the national Spina Bifida Patient Registry) currently has 17 clinics participating in the program. Launched in 2008 under the umbrella of the National Spina Bifida Program (NSBP), the initiative was created by an act of Congress in 2003. It is housed at the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (CDC) in Atlanta and operates in partnership with Spina Bifida Association (SBA).

The data collection initiative was formulated with the purposes of improving the care delivered in Spina Bifida clinics and developing a foundation for future research. The registry is a computerized reporting and database system used to identify current treatments related to some important clinical questions in Spina Bifida using anonymous patient data.

Based on information from the initiative, treatments and outcomes for patients with Spina Bifida can be compared at different clinics as well as across population groups and geographic regions. Researchers can identify areas for future research, and clinicians can refine “best-practice” guidelines for care in Spina Bifida.

How do the clinics use the data?

• Anonymous patient data is gathered into a central database developed by the Centers for Disease Control and Prevention (CDC).
• Each clinic submits data on at least 125 Spina Bifida patients each year for three years. It is expected that data will be collected on the same patients each year.
• Data is collected in an electronic medical record (EMR) that has been designed based on the specific needs of Spina Bifida patients.
• A Project Director or Principal Investigator at each of the institutions serves on a committee along with representatives from CDC, SBA, and the Agency for Health care Research and Quality.
• This committee will oversee the project, analyze data, and identify research opportunities and best practices.

Seventeen Spina Bifida clinics are in the program:

• Children’s Hospital and Regional Medical Center in Seattle
• Children’s Hospital and & Research Center at Oakland (Added as of August 2011)
• Children’s Hospital of Los Angeles
• Children’s Hospital of Wisconsin
• Children’s Memorial Hospital (Chicago) (Added as of August 2011)
• Cincinnati Children’s Hospital Medical Center
• Connecticut Children’s Medical Center
• Duke University (Added as of August 2011)
• IHC Health Services, Inc. (Added as of August 2011)
• Indiana University/Riley Hospital for Children
• Oregon Health and Science University
• Pennsylvania State University Hershey Medical Center (Added as of August 2011)
• Research Inst. Nationwide Children’s Hospital (Added as of August 2011)
• University of Alabama at Birmingham
• University of Colorado, Denver
• University of Pittsburgh at Pittsburgh (Added as of August 2011)
• Wayne State University (Added as of August 2011)

How can my clinic get selected to be part of the initiative?
In order to be selected as part of the initiative, clinics need to apply through a request for application process carried out by the CDC.

How can your clinic be involved?
Encourage your clinic to contact the National Spina Bifida Program at the CDC to learn more and become part of the initiative. Your participation is valued in improving Spina Bifida research and care.