The National Spina Bifida Patient Registry is funded by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, grant #1UO1DDD000744.01.
Article first published online: 2 NOV 2012
Copyright © 2012 Wiley Periodicals, Inc.
Birth Defects Research Part A: Clinical and Molecular Teratology
Volume 97, Issue 1, pages 36–41, January 2013
How to Cite
Thibadeau, J. K., Ward, E. A., Soe, M. M., Liu, T., Swanson, M., Sawin, K. J., Freeman, K. A., Castillo, H., Rauen, K. and Schechter, M. S. (2013), Testing the feasibility of a National Spina Bifida Patient Registry . Birth Defects Research Part A: Clinical and Molecular Teratology, 97: 36–41. doi: 10.1002/bdra.23094
The authors have no conflicts of interest to report.
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
- Issue published online: 10 JAN 2013
- Article first published online: 2 NOV 2012
- Manuscript Accepted: 25 SEP 2012
- Manuscript Revised: 21 SEP 2012
- Manuscript Received: 3 MAY 2012
- spina bifida;
- quality improvement;
- spina bifida clinic;
The purpose of this study was to describe the development and early implementation of a national spina bifida (SB) patient registry, the goal of which is to monitor the health status, clinical care, and outcomes of people with SB by collecting and analyzing patient data from comprehensive SB clinics.
Using a web-based, SB-specific electronic medical record, 10 SB clinics collected health-related information for patients diagnosed with myelomeningocele, lipomyelomeningocele, fatty filum, or meningocele. This information was compiled and de-identified for transmission to the Centers for Disease Control and Prevention (CDC) for quality control and analysis.
A total of 2070 patients were enrolled from 2009 through 2011: 84.9% were younger than 18 years of age; 1095 were women; 64.2% were non-Hispanic white; 6.5% were non-Hispanic black or African American; and 24.2% were Hispanic or Latino. Myelomeningocele was the most common diagnosis (81.5%).
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. Birth Defects Research (Part A), 2013. © 2012 Wiley Periodicals, Inc.