Victoria Barrio, MD
Rady Children’s Hospital
Colleen Cotton, MD
Medical University of South Carolina
This is a retrospective, multicenter study across fifteen sites in the US and Canada examining all children who were evaluated for PHACE syndrome (whether or not they ultimately received the diagnosis) over a five year period. Objectives of the study are to assemble a multicenter retrospective cohort of patients with large facial hemangiomas evaluated for PHACE syndrome with data regarding epidemiology, hemangioma characteristics, and comorbid anomalies; to perform sub-group analyses of the categories outlined above by hemangioma depth and location, including parotid hemangiomas; and to determine the positive predictive value of clinical features that will provide more data-driven and cost-effective screening of children with large facial hemangiomas.
Data collection is complete and two manuscripts are in preparation.
This project received a 2019 PeDRA Study Support Grant to perform further statistical analysis to help identify clinical features that may be associated with high or low risk phenotypes in patients diagnosed with PHACE. The team also hopes to compare complication rates and treatment between PHACE and non-PHACE patients with large facial hemangiomas. All statistical analysis is being performed at the Children’s Hospital of Philadelphia.