Relational databases for rare disease study: application to vascular anomalies.

摘要: Objective To design a relational database integrating clinical and basic science data needed for multidisciplinary treatment research in the field of vascular anomalies. Based on points agreed by American Society Pediatric Otolaryngology (ASPO) Vascular Anomalies Task Force. The enables sharing subsets Health Insurance Portability Accountability Act (HIPAA)-compliant manner multisite collaborative trials. anomalies pose diagnostic therapeutic challenges. Our understanding these lesions improvement is limited nonstandard terminology, severity assessment, measures efficacy. rarity places premium coordinated studies among multiple participant sites. Design conceptually centered subjects having 1 or more lesions. Each anomaly can be tracked individually along with their outcomes. This allows differentiation between responses untreated lesions' natural course. eliminates entry redundancy results extremely flexible search export functionality. Setting programs United States. Results A correlating findings photographic, radiologic, histologic, was created stand-alone multiuser networked systems. Proof concept independent site gathering HIPAA-compliant demonstrated. Conclusions effort ASPO Force to create helped define common set. resulting software powerful tool further study development evidence-based innovation.