This grant proposal is to continue with the collection of data started under FOA DD08-001 aimed at improving the care of individuals with spina bifida in the United States. Standardized data will be collected at this site, along with other funded sites in a longitudinal sample of study subjects. Riley Hospital for Children will maintain a minimum of 125 subjects throughout the funding of the project. However, we will recruit as many subjects from our clinic census as funding will allow. New subjects will be recruited the Riley Hospital for Children Newborn Intensive Care Unit and during visits to the Spina Bifida Clinic. Data from new subjects as well as subjects already enrolled in the project will be collected via information obtained during clinic visits and from retrospective chart reviews using a standardized data collection forms provided by the Centers for Disease Control (CDC). Data will be entered into the Spina Bifida Electronic Medical Record (SB EMR). The information entered from this site will be used for decisions about clinical care and quality improvement initiatives within our own clinic. De-identified data will also be submitted to the CDC under the auspices of the project Coordinating Committee. Data analysis and plans for reporting of results will be determined by the Clinical Data Quality Committee (CDQC).
This proposal is to continue with longitudinal data collection on patients already enrolled in the registry project along with the addition of new enrollees. This project will advance care for persons with spina bifida by allowing better understanding of the current clinical interventions, availability to begin to look at variances of care across sites, an the influence of demographic and other population characteristics on patient outcomes. In addition these data will be able to form the basis for further development of more effective quality measures, best practices and eventual development of standards of care related to spina bifida. In addition this body of work will serve to support future research to better inform future clinical practice.