Vascular Anomalies Patient Database Practices: American Society of Pediatric Otolaryngology Vascular Anomalies Task Force Survey

Introduction

Vascular anomalies, encompassing a wide array of developmental abnormalities in vessels, require robust data management due to their rarity and low prevalence to improve diagnosis, treatment, and research outcomes.

Methods

Members of the American Society of Pediatric Otolaryngology (ASPO) Vascular Anomalies Task Force (VATF) were surveyed to evaluate current practices in managing vascular anomalies databases. The survey collected information on the types of diagnoses and patient data recorded, database management roles, EMR systems in use, and interest in participating in collaborative registries.

Results

Out of 51 ASPO-VATF members, 13 institutions responded to the survey. Of those, 61.5 % (8/13) reported maintaining a vascular anomalies database. Among those with databases, the year of inception ranged from 2000 to 2023, with an average start year of 2010. The number of patients tracked in these databases also varied widely, with 6 institutions reporting over 200 patients, while others had fewer than 50. Most institutions tracked a wide array of vascular anomalies diagnoses, while collecting key patient identifiers and clinical details, such as surgical details and medical therapies. Interestingly, 87.5 % (7/8) of institutions with databases expressed interest in participating in a collaborative study to build a head and neck vascular anomalies registry, underscoring the potential for multi-institutional collaboration to streamline research and improve patient care.

Conclusions

The findings underscore the importance of institution-specific databases and cooperative efforts to address existing challenges. Overcoming barriers to database development and fostering inter-institutional collaboration are critical steps toward more effective management of these rare conditions.