DESCRIPTION (provided by applicant): SB is a common congenital defect of the spine occurring early in gestation. The use of folate supplementation and mandatory fortification of grains in the US since 1998 has demonstrated a decrease in the prevalence of SB in some areas20. In Utah, there has actually been an increase in the prevalence of all neural tube defects (NTD's) since 2003, and no reduction in SB1. Multidisciplinary health care programs designed to meet the complex needs of individuals with SB continue to be needed with greater understanding of research needs to direct best practice and improve the lives of individuals with SB. Few prospective studies have been carried out to make strong conclusions for recommendations for research or practice. This project, National SB Patient Registry Demonstration Project, seeks to advance the understanding of the influence of demographic factors and clinical interventions on outcome for patients seen in a number of clinics with diverse populations. The registry will be used to identify areas for prospective research to direct best practices and improve the lives of individuals with SB. We are positioned in Utah to participate in this project because of our: 1) Comprehensive, statewide surveillance system for SB (Utah Birth Defects Network), 2) Centralized health care for individuals with SB (SB Program, Primary Children's Medical Center), 3) Position as a pediatric tertiary facility of a major health care agency (Intermountain Health Care), which provides robust datasets for linkage. Our goal is to implement the standardized data collection with 125 children treated in the SB Clinic in Utah in 2009, in order to contribute to the understanding of care for patients with SB and identify areas of future research. These patients will be seen in year 2 and year 3. The opportunity to be involved in the project will be offered to all patients. The specific aims of this proposal are: 1. Implement standardized data collection process in the National SB Patient Registry; 2. Conduct data collection; 3. Implement an analytical plan; 4. Participate in a Coordinating Committee with other awardees; and 5. Develop a plan for integrating data findings into clinical practice.

Project Narrative Spina bifida is a well known, complex congenital defect. The Spina Bifida Association conservatively estimates that 166,000 individuals are living in the United States of America with spina bifida. Multidisciplinary clinics have been developed over the years to provide best practice care. Clinical research has been conducted at various centers with retrospective data to critically evaluate and improve care to individuals with spina bifida. This proposal is to become part of a national registry to identify areas of variations and gaps in care, and support opportunities to conduct collaborative, prospective studies. It is anticipated that development of a registry will result in improvement of quality care for individuals with spina bifida. In anticipation of becoming part of a national group, the Spina Bifida Program/Clinic at Primary Children's Medical Center has piloted a registry tool. This has provided an opportunity for members of the program to understand the registry process and potential benefits evaluating variances in care and development of future research projects.