eInsights - October 2009

National Spina Bifida Patient Registry

In May, the National Spina Bifida Patient Registry (NSBPR) added the ninth center to its program. “It was great new for those in the Spina Bifida community that this program continues to grow throughout the country. The registry has the potential to help develop and improve methods of care for those living with the challenges of this complicated birth defect,” said Cindy Brownstein, President and Chief Executive Officer of the Spina Bifida Association.

The NSBPR 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.

Important links

• A complete listing of centers and more information on the NSBPR are available on the SBA Web site.
• NSBPR background

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eInsights is an electronic newsletter brought to you quarterly by the Spina Bifida Association.