National Spina Bifida Patient Registry

Wayne State University, Detroit MI

Investigators

Linked publications & trials

Abstract

DESCRIPTION (provided by applicant): The purpose of this project is to: 1) capture patient data for the National SB Patient Registry, 2) contribute to the national project and identify research opportunities, and 3) establish a data base to ultimately enhance the development of evidence-based practice solutions in caring for children with SB and their families. If selected as a site, the Myelomeningocele Care Center at Children's Hospital of Michigan will recruit a minimum of 125 patients per year with continued longitudinal data collection in subsequent years. Using the standardized data collection form provided by the CDC, information will be collected during clinic visits and retrospective chart reviews. Data will be entered into the National SB Patient Registry database using an Electronic Medical Record (EMR) designed for SB clinics. Through participation on a Coordinating Committee, the direction of additional projects and research from this data will be explored.