Long term outcomes and quality of life in PHACE syndrome

Brief description of study

The purpose of this research study is to investigate symptoms and long-term outcomes of PHACE syndrome in people greater than the age of 10 years old. In this study, we will learn how PHACE syndrome presents as people grow up and how the disease impacts daily life. This study will be the largest investigation into long term outcomes of PHACE and the first to capture the experiences of adolescents with this disease. The results will inform clinicians and patients and help to establish management guidelines in the future.


Clinical Study Identifier: s21-01699
Principal Investigator: Francine Blei.


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