The Spina Bifida Patient Registry Project at Riley Hospital for Children

Indiana University Indianapolis, Indianapolis IN

Investigators

Linked publications & trials

Abstract

DESCRIPTION (provided by applicant): This grant proposal is to continue with the collection of data started under FOA DD08-001 aimed at improving the care of individuals with SB in the US. 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 during visits to the SB 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 CDC. Data will be entered into the SB 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).