Testing the feasibility of a National Spina Bifida Patient Registry |
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| Authors: | Judy K Thibadeau Elisabeth A Ward Minn M Soe Tiebin Liu Mark Swanson Kathleen J Sawin Kurt A Freeman Heidi Castillo Karen Rauen Michael S Schechter |
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| Institution: | 1. Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, Georgia;2. Children's Hospital of Wisconsin Research Chair in the Nursing of Children, College of Nursing, University of Wisconsin‐Milwaukee, Milwaukee, Wisconsin;3. Institute on Development and Disability, Oregon Health & Science University, Portland, Oregon;4. Division of Developmental & Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, Ohio;5. Children's Hospital of Wisconsin, Milwaukee, Wisconsin;6. Department of Pediatrics, Emory University School of Medicine, Children's Hospital of Atlanta, Atlanta, Georgia |
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| Abstract: | 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. |
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| Keywords: | spina bifida registry quality improvement spina bifida clinic research |
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