Relational Databases for Rare Disease Study

Abstract

The collaborative effort by the ASPO Vascular Anomalies Task Force to create the database helped define a common vascular anomaly data set. The resulting relational database software is a powerful tool to further the study of vascular anomalies and the development of evidence-based treatment innovation.

Improved Airway Visualization during Direct Laryngoscopy Using Self‐retaining Laryngeal Retractors

“…Approval was obtained from the Seattle Children’s Institutional Review Board (IRB). The Seattle Children’s Hospital (SCH) quality improvement airway endoscopy database 5 was queried for the years 2009 and 2010. Patients were identified if they had undergone endoscopic airway procedures using the LLDF and had photographic images available both before and after the placement of the LLDF.…”

Collaboration for rare disease drug discovery research

“…Even well-informed individual physicians are unlikely to have experience with all given rare conditions, making diagnoses challenging. Despite the importance for support and knowledge sharing, it is extremely unlikely for rare disease patients to find one another through traditional methods like face to face networking, conferences, newspaper and magazine articles, etc., especially since the Health Insurance Portability and Accountability Act (HIPAA) privacy rules make it difficult 12 , 13 to share information. Recent technological advancements have helped to reduce the barriers for doctors, caregivers, and patients to reach out to find one another.…”

Lymphatic malformations: Current cellular and clinical investigations

“…The tools to do this are available or are being developed. 32 This information can be used to develop further biologic measures to predict treatment efficacy. Additionally, this same information can be used to improve our understanding of the cost of LM treatment.…”

“…In summary, LM treatment can be further improved through collection of longitudinal treatment and evaluation data. The tools to do this are available or are being developed 32 . This information can be used to develop further biologic measures to predict treatment efficacy.…”