Project Description:
This study is conducted as part of a multi-site study to collect health care data of patients with spina bifida, as a means to gather information related to spina bifida for the purpose of improving the care of these individuals. A Spina Bifida Patient Registry is defined as a system for the collection and maintenance of longitudinal data in a structured record including demographics, interventions, and outcomes for specific persons with spina bifida (United States Department of Health and Human Services [HHS], NCBDD, CDC, 2008). A 2005-06 assessment by the Spina Bifida Association of current care in programs around the country that serve persons with spina bifida revealed variation across clinic programs, and gaps between what were felt to be essential services, and the services actually provided (Delmarva Foundation, 2006). The vast array of healthcare issues facing the child with spina bifida requires healthcare professionals to share knowledge and coordinate treatment to ensure quality care (Sandler, 2004; Mitchell, et al., 2004). With its large patient base, established multidisciplinary healthcare team, and ongoing research, the Spina Bifida Center at Childrens Hospital Los Angeles is well positioned to make a substantial contribution to this effort.
The goal of this project is to participate in testing the utilization of a standardized registry tool for collecting data on patients with spina bifida at Childrens Hospital Los Angeles, in order to learn more about the population of children with spina bifida, to improve the quality of care for these patients, and to identify areas of future research. The hope for this demonstration project is the eventual creation of a universal data collection system for caregivers of children with spina bifida to standardize and improve care for these individuals nationally.
Researchers at Childrens Hospital Los Angeles will contact children ages birth to 21 years and their parents when they visit the Spina Bifida Center. Families will be invited to enroll in the Center for Disease and Prevention funded Spina Bifida Patient Registry Demonstration Project. Target enrollment will be a minimum of 125 patients per year for 3 consecutive years. However, for the purposes of this project it will not be analyzed. However, since data will exist in a central repository, it is anticipated that it will be used for other studies with the spina bifida population at CHLA. Information will be available for future research and quality improvement efforts.
Unserved or Under-served Populations:
Racial or Ethnic Minorities, Geographic Areas, Specific Groups
