National Spina Bifida Patient Registry - Clinic Demonstration Project (U01)

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) of CDC within HHS is committed to achieving the health promotion and disease prevention objectives of "Healthy People 2010" and to measuring program performance as stipulated by the Government Performance and Review Act (GPRA). This RFA addresses “Healthy People 2010” priority area(s) of Disability and Secondary Conditions; Maternal, Infant, and Child Health; and to Prevent Birth Defects and Developmental Disabilities, and is in alignment with NCBDDD performance goal(s): Disability and Secondary Conditions; Maternal, Infant, and Child Health; and to Prevent Birth Defects and Developmental Disabilities. For more information, www.healthypeople.gov. and http://www.whitehouse.gov/omb/mgmt-gpra/. Nature of the Research Opportunity 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.