National Spina Bifida Patient Registry - Duke Clinic Demonstration Project

Duke University, Durham NC

Investigators

Linked publications & trials

Abstract

DESCRIPTION (provided by applicant): The CDC, with the help of the Professional Advisory Council of the SB Association, developed a set of hypothesis-driven questions to begin to collect data on SB (SB) patients nationwide in a standardized fashion. In 2008, an initial group of nine SB clinics were enrolled by the CDC to test the feasibility of a multi-institutional National SB Patient Registry. After two years, it has proven feasible, and the CDC is calling for additional SB clinics to join in the clinic registry to further test its feasibility.