FOR IMMEDIATE RELEASE 

Centers for Disease Control and Prevention (CDC) Launches Spina Bifida Patient Registry

Background
Since 2005, a number of organizations have worked with SBA to learn more about the care available at 135 Spina Bifida sites in the United States. We surveyed the sites and the results provided a clearer picture of these clinics.

From the results of this survey and the experience of other voluntary health organizations, the Professional Advisory Council (PAC) of SBA proposed the development of a national infrastructure that could support clinical research and apply a systematic approach to improving the quality of care for people with Spina Bifida.

The first step in establishing this infrastructure is to create a national database on Spina Bifida patients from across the country. Toward that end, the Centers for Disease Control and Prevention recently launched the National Spina Bifida Patient Registry (NSBPR) at the National Center on Birth Defects and Developmental Disabilities. Through SBA’s Congressional advocacy activities, the National Spina Bifida Patient Registry (NSBPR) has come into existence through funding from Congress.

What is the National Spina Bifida Patient Registry (NSBPR) and how does it work?

• The registry is a computerized reporting and database system used to identify current treatments related to some important clinical questions in Spina Bifida. This first step is crucial to a process that will ultimately lead to additional research and to improvements in the quality of care for people with Spina Bifida.
• Currently there are 9 institutions in the Registry.
• Based on information from the registry, treatments and outcomes can be compared at different clinics as well as across population groups and geographic regions.
• Researchers can identify areas for future research
• Clinicians can refine “best-practice” guidelines for care in SB

Which Spina Bifida Clinics are participating in the pilot?
Nine Spina Bifida clinics have received grants to pilot the Registry:
Children’s Hospital of Wisconsin
Children’s Hospital of Los Angeles
Children’s Hospital and Regional Medical Center in Seattle
Cincinnati Children’s Hospital Medical Center
Connecticut Children’s Medical Center
Indiana University/Riley Hospital for Children
Oregon Health and Science University
University of Alabama at Birmingham
University of Colorado, Denver

How will the clinics use the data?

• The anonymous patient data will be gathered into a central database developed by the Centers for Disease Control and Prevention (CDC).
• Each clinic will submit data on at least 125 Spina Bifida patients each year for three years.
• Data is collected in an electronic medical record (EMR) designed based on the specific needs of Spina Bifida patients
• The Project Director or Principal Investigator at each of the pilot institutions serves on a committee along with representatives from CDC, SBA, and the Agency for Healthcare Research and Quality.
• This committee will oversee the project, analyzing data, and identifying research opportunities and best practices.

The Goal
The database will eventually be applied to improve the care of people with Spina Bifida across the nation.

The Spina Bifida Association is the nation’s only national voluntary health agency dedicated to serving the needs of the Spina Bifida Community. Its programs give hope and strength to more than 250,000 people whose lives are touched by this disabling birth defect. One of the SBA’s most vital functions is to communicate to the 65 million women of childbearing age the importance of daily folic acid intake to reduce the risk of neural tube defects such as Spina Bifida. For more information, visit www.spinabifidaassociation.org or call 800-621-3141.