Primary Children's Medical Center Spina Bifida Patient Registry

Ihc Health Services, Inc., Salt Lake City UT

Investigators

Linked publications & trials

Abstract

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.