National Spina Bifida Patient Registry - Clinic Demonstration Project

Submission Date: December 7, 2010

Award Ceiling: $40,000

This FOA will support spina bifida clinics in the United States to participate in the National Spina Bifida Patient Registry (NSBPR) using a standardized registry tool. Clinics will: collect data on patients affected by spina bifida; submit data to a central repository; participate in the data analysis; propose improvements and additions to the registry data collection methods and process; and propose changes to clinical practice aimed to improve the quality of care of persons living with spina bifida.

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