Testing the feasibility of a National Spina Bifida Patient Registry

• Published in: Birth defects research. A Clinical and molecular teratology Vol. 97; no. 1; pp. 36 - 41
• Main Authors: Thibadeau, Judy K., Ward, Elisabeth A., Soe, Minn M., Liu, Tiebin, Swanson, Mark, Sawin, Kathleen J., Freeman, Kurt A., Castillo, Heidi, Rauen, Karen, Schechter, Michael S.
• Format: Journal Article
• Language: English
• Published: Hoboken Wiley Subscription Services, Inc., A Wiley Company 01-01-2013; Wiley
• Subjects: Adolescent; Biological and medical sciences; Centers for Disease Control and Prevention, U.S; Child; Child, Preschool; Databases, Factual; Demography; Diseases of the osteoarticular system; Diseases of the spine; Electronic Health Records; Feasibility Studies; Female; Health Status; Humans; Longitudinal Studies; Male; Malformations and congenital and or hereditary diseases involving bones. Joint deformations; Medical sciences; Meningomyelocele - diagnosis; Meningomyelocele - epidemiology; Meningomyelocele - physiopathology; Population Surveillance - methods; quality improvement; Registries; registry; spina bifida; spina bifida clinic; Spinal Dysraphism - diagnosis; Spinal Dysraphism - epidemiology; Spinal Dysraphism - physiopathology; United States; Young Adult; United States; North America; America; Human; registry; Diseases of the osteoarticular system; Spine disease; Medical screening; Congenital disease; Care; research; Spina bifida; Health status; Malformation; Quality; Specific registry; quality improvement; Feasibility; spina bifida clinic
• ISSN: 1542-0752; 1542-0760
• DOI: 10.1002/bdra.23094

BACKGROUND
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.
METHODS
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.
RESULTS
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%).
CONCLUSIONS
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.