The objective of this project is to improve the care of individuals with SB through participation in the National SB Patient Registry (NSBPR). Specific activities include: 1) Implementing standardized data collection process in the NSBPR, 2) Conducting data collection on subjects enrolled, 3)Implementing an analytical plan, 4) Participating in a Coordinating Committee (CC) with other sites participating in NSBPR, and 5) Developing a plan for integrating data findings into clinical practice. This project will advance our understanding of the influence of demographic factors and clinical interventions on outcomes for patients seen in SB clinics across the US. Longitudinal data will be collected on each of the 125 individuals enrolled at Nationwide Children's Hospital SB Clinic during each year of the project. Subjects will be enrolled by care coordinators and the site study coordinator. These personnel will collect data using an electronic medical record (EMR) specifically designed by NSBPR for this project, and will use standardized data collection forms for uniformity. All data will be de-identified prior to uploading to the NSBPR. Study personnel will participate in ongoing modification of the data collection forms through involvement with the CC of the NSBPR. The resulting NSBPR database will thus be a complete source for SB patient data, and will provide a means for comparing treatment, care, and outcomes between clinics, population groups, and geographic areas. We will also participate in review of the data in the Registry as part of research projects to evaluate outcomes of interventions and determine best practices. These results will serve to inform development of evidence based guidelines to improve clinical care.
Relevance: More than 70,000 people in the United States are currently living with spina bifida (SB), making it the most common permanently disabling birth defect. The care of persons with spina bifida is complex, involving different organ systems and, correspondingly, different clinical specialists. Careful review of current practices and associated outcomes will permit clinicians to establish best practice guidelines and improve outcomes for these individuals regardless of access to specialty centers.
