The National Center on Birth Defects and Developmental Disabilities (NCBDDD) within CDC is looking at the development of a standardized registry tool to collect and enter patient data into a “National Spina Bifida Patient Registry”. According to the Spina Bifida Association, 70,000 people in the U.S. are currently living with the birth defect.
The care for these individuals is complex involving different organ systems and requiring different clinical specialists. As a result, there is the need for a national infrastructure to support both clinical research and to develop a systematic approach that would improve the quality of care.
NCBDDD will commit $320,000 in funds in FY 2008 to fund eight applications. The average award will be $40,000 for the first 12 month budget period. The total funding for the project is expected to be $960,000.
Eligible organization can include public and private nonprofits, for profits, small, minority, and women-owned businesses, universities, colleges, research institutions, hospitals, community-based and faith-based organizations, state and local governments, American Indian/Alaska Native tribal governments, Alaska Native health corporations, urban Indian Health organizations, and tribal epidemiology centers.
The letter of intent is due March 17, 2008 with the application due April 16, 2008. The start date for the project is September 30, 2008. For general questions email PGOTIM@cdc.gov or go to www.grants.gov.