National Spina Bifida Registry Longitudinal Data Collection and Evaluation

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Project Summary/Abstract Objective: The purpose of this proposal is to continue to work collaboratively with the Centers for Disease Control and Prevention and other grantee spina bifida clinics to continue to pilot a disease specific national registry to improve care for individuals with spina bifida. Specific Aims: 1) Continue to pilot the spina bifida registry tool on greater than 125 patients attending the Cincinnati multi-disciplinary spina bifida clinic, 2) Work collaboratively with the Centers for Disease Control and Prevention and other grantee demonstration programs to evaluate and improve the proposed national spina bifida registry tool, and 3) Cooperate with other grantee programs to investigate associations among demographics, interventions, and outcomes in individuals with spina bifida. Background: Spina bifida is the most common permanently disabling birth defect with an estimated 70,000 individuals living with the more significant forms of this neural tube defect. A study of medical services available to patients with spina bifida found significant variability among the responding spina bifida clinics regarding the number of patients served, types of specialty care available, frequency of clinic sessions, and level of care coordination offered. This Spina Bifida Registry Demonstration Project is a pilot program aimed at developing a national clinical registry to assess variability across clinics and to evaluate outcomes-based medical care. The Cincinnati Children's Hospital Spina Bifida Center was chosen as one of the nine centers to pilot the Spina Bifida Registry and continues to have the clinical, administrative, and research support necessary to continue to be one of the demonstration programs. Methods: Using standardized CDC forms and an electronic registry, data will be collected annually from the patients attending the multi-disciplinary Spina Bifida Center in the Division of Developmental and Behavioral Pediatrics at the Cincinnati Children's Hospital Medical Center.