Testing the feasibility of a National Spina Bifida Patient Registry

201257 citationsJournal Articlebronze Open Access

Authors

Judy Thibadeau · National Center on Birth Defects and Developmental Disabilities

Elisabeth Ward · Centers for Disease Control and Prevention

Minn Soe · National Center on Birth Defects and Developmental Disabilities

Tiebin Liu · Centers for Disease Control and Prevention

Mark E. Swanson · Centers for Disease Control and Prevention

Kathleen J. Sawin · Children's Hospital of Wisconsin

Abstract

The creation of a National Spina Bifida Patient Registry partnership between the CDC and SB clinics has been feasible. Through planned longitudinal data collection and the inclusion of additional clinics, the data generated by the registry will become more robust and representative of the population of patients attending SB clinics in the United States and will allow for the investigation of patient outcomes.

Topics & Keywords

Spinal Dysraphism and Malformations Cerebrospinal fluid and hydrocephalus Fetal and Pediatric Neurological Disorders

UN Sustainable Development Goals

Partnerships for the goals

Publication Details

Published in: Birth Defects Research Part A Clinical and Molecular Teratology

Volume 97, Issue 1, pp. 36-41

DOI: 10.1002/bdra.23094

Field-Weighted Citation Impact: 2.83