.) The purpose of this proposal is to work collaboratively with the Centers for Disease Control and Prevention and other grantee spina bifida clinics to pilot a disease specific national registry to improve care for individuals with spina bifida.
Specific Aims : 1.) Pilot test the spina bifida registry tool on at least 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. 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 serviced, 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 Spina Bifida Clinic has the clinical, administrative, and research support necessary to become one of the pilot demonstration programs. Methods: Facility: Data will be collected from the patients attending the multi- disciplinary Cincinnati Spina Bifida Clinics in the Division of Developmental and Behavioral Pediatrics at the Cincinnati Children's Hospital Medical Center. The clinics include adult and pediatric patients and are serviced on-site by developmental pediatrics, neurosurgery, orthopedics, physiatry, and urology. The clinic meets the first 4 Mondays of each month for an average of 48 weeks per year. Staff of the Cincinnati Spina Bifida Clinic participated in the 2008 clinic survey. Subjects: We will enroll a minimum of 125 of our 327 patients in this multi-site pilot registry project. Data Collection: We will annually collect registry information using either paper collection tools or an internet-based registry tool. 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. Individuals with spina bifida receive specialized care from multi- disciplinary clinics which report significant variability in the number of patients serviced, types of specialty care available, frequency of clinic sessions, and level of care coordination offered. The recent """"""""Evidence-Based Practice in Spina Bifida: Developing a Research Agenda"""""""" symposium determined there was an immediate need for higher quality research involving greater numbers of subjects across multiple spina bifida centers and utilizing standardized variables and outcome measures. This Spina Bifida Patient 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.
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. Individuals with spina bifida receive specialized care from multi- disciplinary clinics which report significant variability in the number of patients serviced, types of specialty care available, frequency of clinic sessions, and level of care coordination offered. The recent Evidence-Based Practice in Spina Bifida: Developing a Research Agenda symposium determined there was an immediate need for higher quality research involving greater numbers of subjects across multiple spina bifida centers and utilizing standardized variables and outcome measures. This Spina Bifida Patient 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.
