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- Title
Relational databases for rare disease study: application to vascular anomalies.
- Authors
Perkins, Jonathan A; Coltrera, Marc D
- Abstract
To design a relational database integrating clinical and basic science data needed for multidisciplinary treatment and research in the field of vascular anomalies. Based on data points agreed on by the American Society of Pediatric Otolaryngology (ASPO) Vascular Anomalies Task Force. The database design enables sharing of data subsets in a Health Insurance Portability and Accountability Act (HIPAA)-compliant manner for multisite collaborative trials. Vascular anomalies pose diagnostic and therapeutic challenges. Our understanding of these lesions and treatment improvement is limited by nonstandard terminology, severity assessment, and measures of treatment efficacy. The rarity of these lesions places a premium on coordinated studies among multiple participant sites.
- Publication
Archives of otolaryngology--head & neck surgery, 2008, Vol 134, Issue 1, p62
- ISSN
0886-4470
- Publication type
Journal Article
- DOI
10.1001/archoto.2007.12